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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.**


Saturday, March 31, 2012

Pop goes the MIC-KEY

Raya was about due for a tube change anyway, I just wasn't planning on doing it today. :) The balloon on the tube had its own agenda though. She was in bed not taking a nap this afternoon and we heard her start crying the "Mommy, I need help" and "Ouch" cries simultaneously so I went in to investigate. She hasn't been crying when the tube comes out lately but she was this time. Crying with a smirk. The balloon on her "tubie" had popped, although I'm not sure if it popped because she pulled it out or if she pulled it out because it popped. Either way, it was time to fix her flat. :) It's really strange to see her empty stoma. It really does look like a belly button. I've never seen any other empty stomas to compare it with but hers has some pretty thick scar tissue built up around it and I think that has helped prevent granulation tissue. Ironically, the scar tissue IS a result of granulation tissue... I remember the first time her tube got pulled out. It was only about 2 months after she'd had her surgery and only a couple weeks after she'd had the non-balloon Bard button replaced with a MIC-KEY balloon button. I left the room to sir whatever I was making for dinner and she crawled around the corner of the couch and popped the tube right out. I didn't really panic but I'd be lying if I said my heart wasn't racing when I stumbled my way through putting it back in. Then I sat back and realized that it really wasn't that bad. Sure there was partially digested formula all over both of us, the floor, the blanket, our clothes, etc, but that was pretty much the worst of it. Putting the tube back in was a piece of cake compared to putting the NG tube back in. Once I got that first one behind me, I didn't feel intimidated by it anymore and now it's just part of life. It's happening too often for my liking lately though and one of these times it's going to come out and not go back in. Anyway, here's the old and new tubes side by side: I noticed that there's a rather large piece of the popped balloon missing. It's either in her bed or in her stomach. I guess we'll see. :) After I put the tube in, she sat up and started playing with the " winn" (syringes) and extension tubes that came in the replacement tube kit. Next thing I know, she's pulled up her shirt and plugged in the extension tube by herself. Donny was quick enough to clamp the tube just before the formula came gushing out, thank goodness. She's a smart little cookie. We'll have her trained to feed herself one way or another by the time she's in school. :) Kaida will be so excited that Raya got her tube changed. I told her that next time I had a broken tube, I'd put it in her doll so she'd have something with a tube too like Raya. :) Speaking of which, Raya has laid claim to my first "Tubie Friend". I did one so that the people in charge could make sure I was following directions and doing it right, and I took Raya with me to get it stuffed. We had a couple others to stuff that didn't have tubes in them yet and she liked then but didn't really care that much and wasn't even interested in holding them. Until she saw the finished one. The second she laid eyes on it and said, "Mommy! It have tubie!" I knew I wasn't getting it back from her! :) She has since named her bear "Tubie-rina" and she is totally smitten. :) I hadn't really even planned on making her one because she already had the G tube doll I made her and because teddy bears have never really interested her. As it turns out, if a teddy bear has a G tube, she's VERY interested in it. :)

Thursday, March 29, 2012

complicated

I needed a laugh so I made this:
What can I say, girlfriend likes to do her own hair. :)

This has been an exhausting week in many ways. So much to do, so little time, and so many interruptions. Having Raya get sick threw me for a loop too. It was a strange little illness that was gone in less than 24 hours, but it left me with a bad taste in my mouth. Before Raya came along, I would have never thought of dragging any of my kids to urgent care late at night just because of a 104.3 fever. The ONLY time I ever did that with any of the other kids was when Ashtyn was 11 months old and had been sick and then spiked a high fever and it turned out she had pneumonia so it was a good thing I took her in. Perfectly reasonable.
So then there's Raya. Because of the many months we spent searching for a diagnosis to explain all of Raya's vomiting and everything, I've spent so much of her life worrying about every new symptom and every old symptom that flared and wondering if it was a sign of something serious happening inside her body. I'm now realizing that thinking that way is a hard habit to break. The reality is that as far as anyone knows, she no longer has any major underlying health concerns. She's not immune deficient, she doesn't have heart or lung problems, and her GI problems have significantly improved over the past 6-12 months.
When we were at the urgent care on Tuesday night, it turned into another one of those unpleasant experiences where I go in feeling justified in being there and leave feeling like an idiot. I took her in because it was only the 4th time in her whole 2 years and 4 months of life when she's ever had a fever above 103. The first one was when she was in the hospital after her G tube surgery, the second was a year ago when she had an ear infection, and the third was a few weeks ago when she had a sinus infection. Because she's only had high fevers when she had some type of infection, I was concerned and I had a commitment on Wednesday so I couldn't take her in that day.
Anyway, we got to urgent care and they took her vitals and then the doctor came in and started asking me the routine questions. What are her symptoms? A high fever and a little bit of a stuffy nose. How long has she had the fever? It started this morning and got higher. How long has she had the stuffy nose? A day or two. Has she been vomiting? No, but she's on meds to help control that. Does she have a cough? No. Does she act like her ears hurt? No. Does she tell you it hurts when she pees? Um, she's not potty trained and doesn't acknowledge when she pees, so no. So pretty much just a fever and stuffy nose? Yes, I brought her in JUST because of a fever and stuffy nose. Etc. Then he examined her. Chest is clear, nose is congested, ears look great, could be a UTI but it really just looks like the flu.
This was the part where I started to feel like an idiot for going there. I sat there thinking that this doctor now thinks I'm "that" mom. The one that acts out of fear and paranoia and rushes the kid off to the urgent care at the first sign of illness. It was getting late and I kind of didn't even care anymore, I just wanted to go home and keep doing what I had been doing for her. When he came back in and told me that her urine was clear and that I didn't need to worry because she definitely wasn't dehydrated, I wanted to yell, "That's because I'm NOT an idiot and I've been giving her Pedialyte for the last 5 hours to keep her from GETTING dehydrated!" But I didn't. I politely told him that I wasn't concerned about dehydration because of the Pedialyte she'd been getting all evening. (the ONE benefit of the G tube besides the obvious sustaining of life because of refusal/inability to eat)  He prescribed Tamiflu but said he wasn't sure if she really should take it because although it shortens the life of a flu virus, it can also cause vomiting. I filled the prescription but didn't give it to her. Instead, I sat down at the computer at midnight that night and emailed her GI doctor to explain what was going on and ask if she thought the Tamiflu would be okay for Raya to take and then got Raya settled in and taken care of for the night around 1:00am.
Wednesday morning she was still slightly feverish but was feeling much better. She took a shower and that seemed to recharge her. The fever was gone and a little bit of snot was all that remained of the mystery virus. I've since come to the conclusion that whatever she had was at least partially flushed out by the 14 hours of Pedialyte that I gave her, yay me. In the late afternoon, I emailed the GI doctor to tell her "never mind about the Tamiflu" but she didn't see that until after she had already responded to my overly tired and emotional midnight email. Her response made me feel sheepish. I hate that. I felt a little better when 2 minutes later she emailed me again and said that she saw the second email and was glad Raya was feeling better but I still felt dumb for asking her about the Tamiflu because she said she wasn't comfortable advising me on that and to follow up with her pediatrician about it. I'm not comfortable following up with her pediatrician who has only seen her for "well-checks" and the very rare illness, which is why I asked the GI who has seen her much more frequently and is much more familiar with her body & digestive system than the pediatrician. Why does everything have to be so complicated?!? I'm glad Raya's feeling better, but it bugs me that when she gets sick my brain automatically assumes that it's because of her medical history and I should be more concerned with her than with the other kids.

So all this time, I've been doing my best to keep Raya in a bubble to try to protect her from whatever I thought she needed protection from. What's come of it is that she's not used to going places like church and really anywhere but therapy and the park, and she's still managed to catch several colds and whatever this strange virus was. It makes me wonder if we're doing the right thing by "protecting" her and if she really needs to be kept home as much as we do. If she's still going to get sick anyway, what's the point? I try to remind myself that when she got sick a couple months ago it set us back pretty far on her eating and sensory issues, but I still can't help but feeling like I need to do a better job of treating her like a typical kid. Ugh. again, why do things have to be so complicated?

Speaking of complicated, we found out today that our authorization for the 2nd hour per week of OT had not been extended like I thought. I was told last month that it ended on March 30th but that if I called our coordinator when we found a therapist to take both hours of therapy, she would extend the auth. I left her a message but apparently for whatever reason she couldn't or didn't extend it. That leaves us in the position of A. having to justify & beg & plead to keep the 2nd hour, and B. prove that it's absolutely necessary to keep having therapy in clinic instead of at home due to changes that the early intervention program recently made that requires all EI therapies to be done at home. Honestly I don't think it's going to be a problem getting the auth extended and staying in clinic, but these days you just never know. We've been doing OT in clinic for over a year because nobody has availability for home OT. It's just frustrating because we thought the issue had been taken care of already and also because we're FINALLY getting Raya back on track and starting to make progress and this jeopardizes it. I'm kind of too tired to stress about it this week though, so I'm not.

Well, just so I don't end on a totally depressing note, here's a fun picture from a couple days ago when I realized Raya had painted her big toe with nail polish and was wearing a pair of her sister's underwear around her waist. She's fascinated with "pannees" but she's totally clueless about going potty. She asks me several times a week if she can go potty and I always set her on the potty but she's never gone. We are so far off from being able to potty train, especially due to the fact that tube-fed kids are generally well hydrated so they pee a lot. :)

 

Tuesday, March 27, 2012

Raya's day in pictures

9:30am: take shower to wash mushy Cheerios out of hair and upper half of body:


10:30am: take short nap before therapy


11:45 am: ride to therapy without making a peep during the whole drive, making Mommy wonder what's wrong with you
12:15pm: fall asleep in the cuddle swing (or is it coddle swing? never can tell) which REALLY makes Mommy wonder what's wrong with you, prompting therapist to take your temperature which is 99.5 degrees

1:15pm: turn down feeding therapist's offer of your favorite food: sour cream

2:00-3:00pm: be like this:


3:30pm: fall asleep for the 3rd time in one day while your temperature continues to rise


6:00 pm: voluntarily lay on the couch. Yep, definitely sick.


7:30pm: watch Mommy lose all faith in her new temporal artery thermometer when she takes your temperature and it reads 106.3 because you're hot but not THAT hot

9:00pm: Tell Mommy you want to go to the doctor


10:00pm: watch Mommy's cheeks turn red while she tries to convince the urgent care doctor (and herself) that she's not just bringing you there out of undue paranoia, especially when he says your ears are clear, your chest is clear and he thinks you just have the flu but you might have a UTI. Then they cath you to test your urine. It really pisses you off. (please excuse Mommy's little late night urine humor)


10:30pm: watch Mommy bite her tongue when the doctor comes back in and says, "Good news, her urine is clear." Because that's not good news. A UTI would have been better because the other 5 people you live with can't catch a UTI from you. Then watch Mommy force a smile and nod when the doctor says, "She's definitely not dehydrated." because you and Mommy both know that the whole reason you're not dehydrated is because Mommy was smart enough to start giving you Pedialyte through the G tube as soon as your fever hit 102.

10:35pm: You and Mommy want to go home and go to bed.
10:40pm: Take a Mr. Incredible sticker on your way out and yell, "Bye!" whilst doing your best beauty queen wave so that all the nurses will say, "Awww, she's so cute!" Then get in the car and play with the sticker while Mommy tries to find a 24 hour pharmacy that has liquid Tamiflu in stock.

11:15-11:45pm: Sleep peacefully in your carseat while Mommy sits in the parking lot at Walgreens waiting for the stupid Tamiflu.

11:55pm: Get annoyed with Mommy when she takes your flip flops off because you wanted to wear them to bed.

It's been a long day. Thank heavens for Pedialyte through the G tube and that it's not this complicated with the other 3 when they get sick. We apologize to anyone we may have infected if she does in fact have the flu. However, given the limited number of places Raya goes, she probably caught it from the same places we potentially contaminated with it today so I don't feel that bad.

Friday, March 23, 2012

3 Little Princesses

*If you have a heart, grab a tissue before proceeding*
If you were to happen upon these three little beauties happily playing in the grass with their pink balloons, you would likely never imagine just how miraculous it is that they are alive and standing in front of you. You would never imagine that one of them was given a 20% chance of survival due to a severe birth defect, one of them vomited approximately 700 times in her first year of life with no known cause, and one of them has a list of medical diagnoses longer than she is tall. You wouldn't look at them and guess that they've spent a combined total of close to 6 months in the hospital. (and let's not talk about what their combined total medical bills are!!) Their medical conditions are vastly different but they have one thing in common (well, aside from the fact that they're all adorable!)
 They are all completely dependent on feeding tubes for all of their nutrition, hydration, and medication needs. The gravity of that statement hit me when I started opening up the files to edit the pictures. To look at these girls, you would never imagine the turmoil that they've faced in their little lives. It was so humbling to look at them and know that if it wasn't for those little feeding tubes...  The three of us (their "tubie mamas") agree that as much as we sometimes resent and even hate the feeding tubes, we can't help but love and be grateful for them as well.
Alix, Alicia and I have been trying since November to find a time that we could get our girls together to take pictures of them. We had planned to do it on Thanksgiving weekend but Raya broke her arm. Then poor Lily was in & out of the hospital. Then Raya had a 6 week long cold/stuffy nose that turned into a sinus infection. THEN once they were all healthy-ish (knock on wood), we had the laughable task of finding a day and time when none of the girls had any therapy or doctor appointments and that didn't interfere with anybody's nap schedule. Finally after 4 months of patiently waiting for the stars to align, it happened and we were able to get them together for the first time last Friday. It was pure joy for all of us to see our sweet girls playing together.

I suppose proper introductions are in order. :) Meet 20 month old Miss Whitney K:
When Whitney's mom Alicia was 21 weeks pregnant, an ultrasound revealed that something was not right. After seeing 5 different doctors, they were finally given the devastating news that their daughter had a right-sided Congenital Diaphragmatic Hernia. Approximately 2/3 of Whitney's diaphragm was missing and as a result, her liver and intestines were developing in her chest cavity rather than in her abdomen where they belonged, leaving little room for her lungs and heart to develop properly. The outlook was not good and she was given a 20% chance of survival.
At birth, Whitney had to be intubated immediately because her defect prevented her from being able to breathe. The next day, she was placed on ECMO (heart/lung bypass) and she remained on advanced life support for 6 days. At 7 days old, Whitney's hernia was surgically repaired with the use of a gortex patch. Alicia waited 15 days to finally be able to hold her baby girl and 3 weeks to hear her little voice. After 56 days of extreme highs and lows, Alicia and her husband Thomas were able to take Whitney home. Eating and gaining weight were always a struggle, and at 5 months old, Whitney needed a feeding tube. Due to her CDH, she is at high risk for complications from simple viruses like colds and flu. She has struggled with oral aversions, vomiting, pulmonary hypertension, GERD, and other issues as a result of her rough start to life, but one thing is for sure. Whitney is a survivor in every sense of the word! She has a bubbly personality and deep brown eyes that sparkle and light up a room. And let's not forget that luscious hair! She is very smart and I was totally impressed by all the sign language she was using the whole time we were doing the photo session. We ♥ Whitney!
(To read more about Whitney, click here and here.)


And this is 14 month old Lily:
Lily's troubles began shortly after birth. She was unable to suck and swallow without her mother Alix going to extreme measures to help her. After many weeks of struggling just to try and get enough calories into Lily, the struggle to keep the calories in became increasingly difficult. Lily was miserable. She cried and screamed for hours on end. Her parents were exhausted and overwhelmed. In spite of everything they were doing to help her, she was weak and malnourished. At birth Lily weighed 6 lbs 8 oz and by the time she was 4 months old, she weighed only 8 pounds. There was growing concern over the risk of brain damage due to malnutrition, as well as other complications. At that point, Lily needed a feeding tube.
During her first few months, the list of Lily's medical problems kept growing. Things like laryngomalacia, dysphagia, failure to thrive, immune deficiency, motor delays, oral aversion, silent aspiration, low muscle tone, Sandifer syndrome, and eosinophilic gastroenteritis were added to her chart. With all of these diagnoses came more questions. Why did she have so many things going on in so many different areas of her body?
One possible explanation kept coming up, and it terrified Lily's parents. After having a muscle biopsy done, it was confirmed that Lily has mitochondrial disease. This means that the mitochondria, which are the powerhouses of the cells that make up our bodies, do not convert vitamins and nutrients into energy in a way that is sufficient for the cells to perform their proper functions. If the cells don't perform their functions, tissue damage occurs and the systems of the body fail. There are different types of "mito" and it affects everyone who has it differently, but it can affect every system in the body. There is no cure and it is progressive. No one can predict the rate at which it will progress.

What this diagnosis means for Lily in the coming years is uncertain except that she will continue to face many struggles with her health. Mitochondrial disease is cruel and unpredictable, but Lily is a fighter. Her parents are living on hope and faith, of which they are great examples. Amid the doubt & uncertainty of what her future holds, she continues to exceed the expectations placed on her by those in the medical community. One of her most recent and most exciting accomplishments was learning how to walk. Being around Lily is pure joy. We ♥ Lily!
(To read more about Lily, click here.)

Now I know that a lot of this sounds horribly depressing. It kind of is. The thing about these girls is that they are not defined by their 5 pound medical charts, or by anything in them. They are little girls with big spirits who are doing the best they can to rise above their physical challenges. Their personalities are so much fun and their smiles and laughter can quickly make you forget about the pain and difficulties that they go through every day.
*dabbing eyes*

I had asked Raya earlier in the day if she wanted to go see Whitney and Lily and she said, "Yeah! Ah-see Wet Willy!" No matter how much we practice, they have become collectively known as Wet Willy. :) Or Willy and Whit-na-nee. Either way, it's cute. :) I love the age when kids get old enough to start having friends, and Raya knows that "Willy" and "Whit-na-nee" are her friends. As I've been editing these pictures, Raya will climb up on my chair (when someone leaves the baby gate open and she sneaks upstairs) and sit on the arm of the chair and say, "Wet Willy! I wye Wet Willy!" Translation: Whitney and Lily! I like Whitney and Lily!
The girls are all very proud of their tubies and they're pretty darn smart too. We asked them "Where's your tubie?" and in unison, they all lifted up their shirts to show us. Raya had never seen a feeding tube in someone else's belly before and the look on her face when she saw them was a mixture of familiarity, confusion and excitement. She thought it was pretty neat! :)

I talk a lot about the Feeding Tube Awareness Foundation and FTA facebook page on Raya's blog, and there is good reason for that. The website has just about everything I wish I had known from the beginning of our feeding tube journey and is constantly expanding to include more resources and helpful information for tubies and those who care for them. What the website doesn't have, all of the wonderful people who frequent the facebook page make up for with the experiences and knowledge that they freely share with each other. At risk of sounding melodramatic, those resources have been tremendous blessings to me and subsequently to Raya, whose care has involved less trial and error since I came across them. :)
One of the greatest blessings from FTA has come in the form of new friends who "get it" because they are living it too. I hadn't really thought about it until I saw how much Raya was enjoying Whitney & Lily, but Raya has been blessed with friends who "get it" too.
We may not be able to get them together very often, but I'm so thankful that these girls have each other and SO thankful for their sweet mamas!

Trying to get 3 girls age 2 and under to look in the same direction at the same time and hold still long enough to click the shutter button is pretty funny. We got a lot of pictures like this:

And this:

 And this:

As we were chatting and tossing around medical terminology that would have made all of our heads spin a couple years ago, all the people passing by would look at the girls and comment on how cute they were in their little matching outfits. I wanted to tell all of them, "No, you don't understand! Yes, they're cute but don't you realize that you're looking at MIRACLES?!?"
And that's exactly what they are.

Wednesday, March 21, 2012

Ennnnnnnn-Terrrrr-Aaaaallll

Normally phone calls with the home health company's billing department aren't anything to laugh about. Really. I can't tell you how many hours of my life in the past 2+ years have been spent on the phone with them trying to straighten out messes between them and insurance. Anyway, occasionally the person I'm talking to will say something that makes the conversation a little lighter for me whether they realize it or not. Yesterday I called to clear up an incorrect bill and a lovely woman answered the phone. (oh, but first I called and the guy that answered the phone hung up on me)
So we went through the discussion about the bill and she fixed the problem (hopefully) and then said she needed to ask me a couple of questions before we hung up. Now I've forgotten the first couple she asked, probably because the third one made me laugh and I forgot. :) I should preface this by saying that I wasn't laughing AT her, I was just laughing at what she said because it's a common mispronunciation. And also that I might possibly be the only person who thinks it's funny.
She said, "Now I see that Raya still has an eternal feeding pump. How's that working out for her?" What she MEANT to say was EN-TER-AL, not E-TER-NAL. Enteral means: "directly into the gastrointestinal tract; pertains to tube feedings that may be necessary when a patient cannot ingest food orally". Eternal means FOREVER. (see, it's funny! :)
So being that I am who I am, when the nice lady asked how our eternal feeding pump was working out for us, I had to bite my tongue and restrain myself from popping out with any snarky responses because, after all, it was just a simple mispronunciation. But good gracious I can only HOPE that this won't be an ETERNAL feeding pump! :)

I've been working here & there since Friday on editing what is quite possibly my favorite photo session I've ever done. I'll be doing a post about it when I'm finished with the pictures (and you'll need kleenex nearby when you read it) but here's a couple of outtakes. After 4 months of trying to fit the schedules of 3 very overscheduled toddlers together, we were finally able to meet up with Raya's little tubie BFFs, Whitney & Lily. Raya referred to them collectively as "Wet Willy" and then moved on to "Willy" and "Whit-na-nee". The girls were adorable and had so much fun together and I can't wait to share all the pictures! All I have to say is thank goodness for digital because I took about 200 pictures and at least half of them look like this:

Monday, March 19, 2012

Happy Monday, Mommy!

I used to refer to Raya as my little vomiting alarm clock due to the inevitable 5:30-6:00 vomiting. Then she moved on to waking me up by filling the room with the stench of Peptamen poop. Thank goodness those days are mostly behind us. She's coming up with a new wake-up call though, and I'm not a fan. This morning she climbed out of her crib, came over to the bed and said, "Mommy, my tubie out!" And so it was:
I'm really not sure how or when it came out this time. The balloon and her belly were dry so I don't think it got pulled out when she climbed out of bed. The balloon was full of water still (5.5ml) and it hasn't gotten lopsided or anything so I just don't know. The good thing was that it went back in really easily and she hadn't gotten fed overnight so there was no belly puke to clean up. :)


Then there was naptime. Always an adventure. :) Ever since her OT came over on Friday and brought the exercise ball for me to sit on and rock her as part of her sensory protocol, she doesn't want to go to bed without me rocking her. It does make things a little difficult sometimes when I need her to just go to bed, but I'm not complaining at all. I've been waiting a LONG time for her to decide that she's okay with me snuggling her like that and I love it. Most of the time I'd rather just forget everything else that's waiting for me and rock her until she goes to sleep.
Anyway, today she went to bed with no fits but didn't go to sleep quickly like I had hoped. I had some work to get done upstairs so I don't really know when she actually fell asleep but I came down when I heard the pump start beeping. I peeked through the hole in our bedroom door (Raya locked us out once & there's no key so we had to cut a hole in the door) and the little stinker was on the floor sleeping like a rock. At some point, she had climbed out of bed but with the pump hooked up to her and the backpack hanging on the IV pole, she only had about a 6 foot "leash" so she didn't make it far.
She was so cute sleeping with her little bum in the air! :) She has been very sweet and cuddly today in between saying things like, "Go upstairs and get jammies on!" to the big kids and, "You're mean!" to me. :) She's also been pretending to be a kitten a lot. She'll hug my leg and say, "I'm a diddin, Mommy! MEE-ow!" and then crawl around on the floor. I ♥ her! :)

Sunday, March 18, 2012

The cleanest mess she's ever made

We're still plugging away at the sensory protocol. Raya's OT was able to come to our house on Friday and go through the protocol with her in the same environment that I do it in. It became quite obvious at that appointment that Raya has been classically conditioned to relax in the presence of her therapist. :) As soon as we walked into the room and turned on the relaxing music, Raya laid down on the floor and didn't move a muscle while her therapist massaged her and did joint compressions. When I do that with her, Raya sits up every 5 seconds to try and get more lotion and in between that, she's yelling, "I want more lotion!" For the therapist, nada. She just laid there and let the therapist massage her and be in control of the lotion. After the massage & joint compressions, her therapist wrapped her up in one of her favorite blankets and rocked her. Within 2 minutes, the kid was asleep!

Yesterday at naptime, I went through the sensory protocol with her just like her therapist did the day before. She was more cooperative than usual and even though she didn't fall asleep, she didn't throw a fit when I put her in bed so I considered it a success. For a few minutes anyway. Then I heard her crying and yelling, "MOMMY!!" over and over again so finally I went in to see what was going on. Here's what I found:
Instead of going to sleep like she was supposed to, she climbed out of her bed to fetch a little pink bolster pillow full of tiny styrofoam beads that was sitting on the foot of our bed. If you look closely, you can see that the tubing from her feeding pump is stretched as far as it can go since it's still connected to her stomach. Evidently, the cheap-o little pillow had a weak seam in between the tags and it sprung a leak. To a curious toddler, a little hole that your fingers can get into MUST become a large enough hole that your whole hand can fit in, so Raya took care of that. Then all the tiny styrofoam beads came spewing out of the pillow and all over everything around her. Thanks to static electricity, we will be finding tiny styrofoam beads for years to come. While I stood there trying to decide where to begin the vacuuming in order to minimize the spread of the styrofoam spill, I of course took several pictures.  She looked like she had just broken out of a snowglobe. :)
She kept getting them in her mouth (which is why she's sticking her tongue out in the picture above) and that was a good reminder of how much progress she's made. If she'd gotten those tiny things in her mouth a year or 18 months ago, she would have gagged and thrown up. :)

This is her best attempt at a sad face. She was trying really hard to cry and mean it. :)
This is what the inside of the vacuum looked like after the cleanup.
 This was one tricky mess to clean up! It seemed like the more I tried to clean it, the more it spread. After a solid 30 minutes of vacuuming, shaking things out, brushing them off of both of us, vacuuming more, etc., I gave up and declared the mess clean enough. We will be finding them stuck to everything for years to come but quite honestly, I would clean up that mess ANY DAY as opposed to some of the other messes that girl has made. This one didn't involve any smelly substances pouring out of her stomach or intestine or any other orifices. :)

Saturday, March 17, 2012

General busy-ness

Maybe it's just because the kids have been out of school on spring break this week but I feel like I've been running around like a headless chicken lately. I'm excited about everything that we have going on right now in our lives, I just need a little time to figure out how all the pieces fit together. :)

We had a nice visit with my mom last weekend. Raya was fascinated with her and also with the toy airplane she brought her. Raya LOVES airplanes right now and yells, "Eh-pane! Eh-pane!" every time she sees one, so a toy airplane was the perfect "GramE gift" for her. She often insists on sleeping with it and one of the nights that she and I ended up on the couch recently, she HAD to bring her blankets AND her airplane to snuggle with.
It's not very cuddly but she had a fit if I touched it. Since she actually went to sleep, I just let her have it and didn't rock the boat. There was one time that she had dozed off and it wasn't touching her anymore so I thought it would be safe to carefully take it off of the couch & put it on the floor but she woke up about 10 seconds later and said, "Hey! Wheh ma eh-pane?!"

Last Monday morning, we decided it would be fun to take the kids to the zoo after Raya's weight check. To make a long story short, we checked in at 9:00 and the guy didn't bother to page anybody to tell them we were there for Raya's weight check so we sat in the waiting room for 30 minutes because the MAs didn't know we were there. At Raya's last GI appointment, I was running 10 minutes late and the people at the front desk acted like I had showed up an hour late or something. It was totally okay for them to just not bother to page anybody and make me wait for 30 minutes but it wasn't okay for me to get a hole in my contact lens so I had to go home and change it and show up 10 minutes late. Thank goodness things like that don't happen very often!
On a positive note, we did have a good weight check. Raya is up to 12.835kg (28 lbs 4.7 oz) which is a gain of about 7 ounces since her last appointment. Good enough for me!

After our 45 minute weight check, we started driving to the zoo and ended up being forced to take a detour because of an accident blocking the freeway we needed to take. I've only been to the zoo once or twice and I only knew how to get there from that particular direction so we accidentally took another detour but eventually found it. When we pulled in, there was a guy directing traffic into the overflow parking lot that they use for field trip buses. It was half full already. We got there about an hour later than we had planned on and Raya was already getting really sleepy and a little crabby. It was hot too. We realized upon seeing the massive crowd of people that were still waiting to even get IN to the gates that the first day of spring break is the WRONG day to try to go to the zoo so we decided to go have lunch and see if the neighborhood pool was warm enough for a swim instead.

We got everybody ready to go swimming and walked to the pool. As we were getting ready to get in, the guy from the pool company came and dumped a bunch of powdered chlorine into the pool. Thwarted again. He said if we waited 10 minutes it would be safe to get in but honestly the idea of swimming in chemicals that I had JUST seen him dump in didn't seem like a great idea so I let the kids stick their feet in on the side opposite of where he dumped the chemicals. Then the people in the hot tub got out so we had the hot tub to ourselves for the kids to swim in, which I prefer anyway. I don't like cold water. :)
They had a great time and Raya was thrilled to be back in the water again. She's really missed "fwimmeen" with her OT!

We went out for dinner Monday night at a Mexican restaurant where they give you a bowl of chips, salsa and bean dip to snack on while you wait for your food. Raya likes chips so we gave her some. She saw everyone else dipping their chips into the bean dip, so I let her have a taste of that. All it took was one taste of that spicy, onion-y bean dip and she was hooked! She hogged it so we scooped most of it out of one bowl and turned her loose with some chips and a little bit of dip of her very own.
For the rest of the week, she's been saying, "Mommy, ah-wah ma-BEANS!" and then she gets mad when I tell her they're all gone. We might have to go back and get some more, darn it. :)

I emailed her GI doctor on Wednesday about all of this waking up late at night crying like she's not feeling well and seeming to have an increase in reflux symptoms. There can be a lot of different reasons for that but for now, we're giving her Carafate (an ulcer medication) in case there is any irritation in her stomach that's causing her to be uncomfortable. She also started up another periactin cycle (read: I remembered to give her periactin) this week and as luck would have it, periactin can have a positive effect on slow motility so maybe the combo of the two will help get her past whatever is bothering her.
I've also started giving her pureed food through her tube again. So far it's just been baby food purees mixed with kefir and coconut milk so it's all liquid and I haven't had to blenderize anything but I'm looking forward to getting back into more of that. She has done well with gaining weight on her formula and I'm not intending to take that away, but I do think it's really good for her body to have some real food to digest too. Even if the dietitian at the hospital doesn't agree with me. :) We're still meeting her daily calorie goal, we're just using food to make up a portion of it and I feel good about that. The tricky part is that she wants to feed it to herself and one of these times, the syringe is going to come unplugged and pureed food is going to go flying. :)


The highlight of my week was a little photo session that we did with two of our little tubie friends, Lily & Whitney. We've been trying since November to find a time when the girls were all healthy, didn't have any broken arms (Raya kept messing that up), weren't in the hospital, had openings in their busy therapy & doctor appointment schedules, and when the weather was good. FINALLY after 4 months, the stars aligned and we got our photo session in. :) It definitely deserves its own post but here's a little preview:
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