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Showing posts from May, 2011

I have no words for this :)

This time, it's EXACTLY what it looks like: Raya had her first real drink of water today. EVER. I watched the muscles in her throat swallow 3 or 4 times in a row. I got it on video too. I think I'm more proud of that than I was of her first steps. In a lot of ways, this is a much bigger deal. :)

Mommy's taking baby steps too

Babies aren't the only ones that take baby steps. Sometimes mommies need them too. I can count on 1 hand the number of times I've left Raya with someone other than Donny for her whole 18.5 months of life. She's only been left with 4 other people, one of whom was an RN so I knew she'd be okay if Raya's feeding tube got pulled out. :) It's not that I don't trust other people, it's more that I know taking care of Raya can be stressful even for me, so I can imagine how much more stressful it must be for somebody else who may not know what to do in the event that something goes wrong with her. I was never a "helicopter parent" before, but I think I'm justified in being that way now. :)
Yesterday, there was a really big black belt test for the martial arts students that Donny teaches at the community college and he wanted me to come and take pictures. I was excited about it but knew that there was no way I could take Raya with me. That meant tha…


Surprisingly, Raya's cardiology visit was the MOST pleasant doctor's visit we've ever had. Based on the number of visits we've had, that says a lot. :) She behaved PERFECTLY (other than the poopy diaper) and didn't cry, scream, or puke at all. She was cute and charming and happy the whole time. She had an EKG and since she held so still & behaved so well for that, her heart function looked fine so we didn't have to do an echo. The NP (who I really liked, by the way) listened to all the different parts of her heart and said that her murmur sounded like a very typical innocent murmur. Just to make sure, she had one of the cardiologists come in and listen too and he agreed. It's very common and nothing to worry about. The words, "We won't need to have a follow-up with Raya." were like heavenly music to my ears! We've never been told that before. :) So the cardiology consult is out of the way and I don't have to be paranoid about that …


I will admit it. Usually I really enjoy being right. I'm kind of bummed that I was right about Raya losing weight though. She had a weight check today and has lost 12 ounces since we were there a month ago. I had suspected that she was losing a little because when I lay her down to change her diaper, her little pot belly is almost flat and the tabs touch in the middle again. So yeah, she's losing lots of fluids every day and has lost 3/4 of a pound in a month. Not great but really not sure what there is to do about it. GI doctor will be back tomorrow so I'm anticipating (and HOPING for) a phone call or something. On Friday she has her cardiology appointment which should turn up big fat nothing, otherwise known as a innocent murmur like her big sister has. Gotta love a little extra Raya drama the last week of school. :) It's a fitting end to the way we started the school year. :) (She got her G tube 6 days before school started & ended up being in the hospital for 5…

Feeling like a broken record

And the drainage just keeps on comin'. I remember being totally floored when Raya hit 275ml last fall. I was blown away that her stomach would produce THAT MUCH excess fluid. That, of course, was NOTHING compared to the last 7 days. In the last week, she has lost 360ml, 430ml, 470ml, 470ml, 395ml, and yesterday was a whopping 495ml. If it wasn't for the relentless vomiting that got us to the GJ tube to begin with, I would yank that thing out (well, deflate the balloon and gently remove it) and just put in a regular old G tube but that's not the answer either. I don't know what the answer is. Apparently nobody does. Just keep pushing the Pedialyte and let us know if anything changes. And how long can that go on without something changing, and what if it changes for the worse? The doctor is out of the office until Thursday. Fabulous. We have a weight check on Wednesday which will either confirm my suspicion that she's lost weight this week or else there's some ot…

Thank heavens for Pedialyte!

Today I'm thankful for Pedialyte. We would be in big trouble without it. We are now on day 4 of draining unbelievable amounts of fluid from Raya's stomach, and I think the only thing that's keeping her from getting dehydrated & needing IV fluids is the pedialyte. Things started out a little slower yesterday and I thought maybe her system was starting to regulate a little, but by 11pm (when we start new feeds & measure drainage from one day to the next) she had lost 470ml of gastric fluid. Just for comparison's sake, that's 15.67 ounces, which is almost 1 pint. That is a very large amount. When she was inpatient in October, the GI doctor on call the second week wouldn't release her until she was losing less than 200ml/day for a couple days in a row. At that point we were giving her about 300ml of pedialyte a day to make sure she was adequately hydrated. We tapered it off as her system got itself regulated and then she didn't need it anymore after a c…

Still draining

I had hoped that I'd wake up today and Raya would miraculously be digesting again but it didn't happen. Well, I shouldn't say that because she is still pretty much digesting her formula, although sometimes it smells exactly the same coming out as it does going in. Gross.
Anyway, she had a total of 360ml of drainage yesterday. That's 12 ounces. It might not sound like that much but when she only gets 30 ounces of formula and another couple of ounces of water, 12 is a LOT. Today has been pretty much the same story except that she didn't have the 30 minute crying/screaming/writhing session followed by vomiting like yesterday so that was nice. She seemed to be feeling a bit better today but the drainage just keeps on coming. I've had a couple people ask me what exactly is draining out of her and what it looks like so here's what we're dealing with:
It's mostly bile mixed with saliva and anything else she happens to swallow. I've been emptying the bag…


I knew that a tube change was inevitable but I was dreading it. Why? Because the placement of a GJ tube seems to be a tricky thing. When she got her first one back in October, she immediately started having huge amounts of bile in her stomach that we had to drain out through her G tube. Then when we went to Ohio in December, they had to take out her GJ tube for testing and then put in a new one. For whatever reason, after they changed her tube, the drainage went WAY down and has continued to decline to the point where recently, we've only had to drain her stomach during pump feeds (mostly at night) and rarely at other times when she seems to have an upset stomach. Instead of yellow or green bile, she has been draining almost clear fluid. Until today.
So this morning, I woke up to the dreadful sound of her filling her diaper with liquid diarrhea (sorry, TMI) which her GI doctor suspects may be a by-product of the contrast dye they used when they placed the GJ tube. Ok, we'll wai…

You BROKE your kid's GJ tube?? Who DOES that?!?

Yep, that would be me. :) I broke Raya's GJ tube. Remember how in my last post I mentioned a paranoia about her feeding tube or extension tubes getting caught on something? Well that's exactly what happened. I took her to her 18 month well check this morning, which is always fun. (ha ha) The MA weighed & measured her and then she was just running around in her diaper waiting for the doctor to come in. I usually tuck in her extension tubes so they're not just dangling but she didn't have clothes on to tuck them into. I reached out and picked her up and the extension tube that was hooked to the G port got caught on my chair. The tape ripped off of her stomach and the entire G port just popped out of the GJ tube and fell on the floor with the extension tube still attached. I sat there stunned for a second trying to figure out what had just happened and then picked up the port & extension tube, wiped off the port, and shoved it back in to stop the flow of stomach c…

Raya's first day of nursery

Raya turned the magical age of 18 months old last week. Why is 18 months a magical age, you ask? Because that's when kids can start going to the nursery class at church. :) When the other 3 kids hit about 12-14 months, I started counting down the days until they could go to nursery. 3 hours of church feels like forEVER when you're trying to keep a squirmy toddler from running all over the place, and you can forget trying to hear anything that's being taught in the lessons.
It's been a little different with Raya though. I've been counting down the days with her too but there's been some dread in the countdown. I know part of it is just me wanting to stay in control of as much of her life as I can and I need to get over that. Part of it is my germophobia. I know they try to keep things clean & sanitary but nursery is like a little petrie dish. Raya has somehow managed to stay very healthy through the winter & spring and I don't think it's any coin…

A little epiphany

Tonight I was talking with my dear friend Brooke about some of the things that go along with having a child with special needs. She has a darling 8 year old daughter with Down Syndrome, so she gets it. :) I was telling her how the last couple of times I've talked to Raya's GI doctor I've told her how frustrating it is for me to not have a label for Raya's health problems, and that at the same time, I don't understand why I have such a need to put a label on it. Why would I want to label my child with a disability or syndrome?? 
While Brooke and I were talking (well, mostly I was talking and she was listening :), I was telling her about some of the blogs I stalk on a daily basis that are written by moms of children with heart defects. Why do I stalk heart moms? It started out when I was looking for blogs that had anything to do with feeding tubes. I found quite a few that caught my interest, and it just so happened that they were all kids who had either had heart s…

Public Service Announcement: PAY ATTENTION TO MEDICATIONS!!

I know I joke a lot and I try to keep things light, but I'm being completely serious here. This is especially for anyone who has a child that's on multiple long-term medications. We had a close call today with what could have been a serious overdose if I hadn't been paying attention.
Raya has been on Neurontin for about a year now. Up until this last month, there wasn't a generic for it. It came in a delightful strawberry-scented liquid that was a solution of 250mg/5ml. Her current dose is 2ml twice a day, so she's getting 100mg of the medication twice a day. At her last appointment, I had the doctor rewrite all of her prescriptions for me because we were out of refills. I had the neurontin filled this week and went to pick it up yesterday. Normally, we get a small bottle with 120ml in it, but the lady pulled out 2 HUGE bottles with a total of 600ml.

Naturally, I asked why we suddenly had these enormous bottles and she said it was because the generic came in a…

MBS #3

Raya had her third modified barium swallow study today. An MBS is used to determine whether or not someone is swallowing correctly. In Raya's case, we needed to be sure that when she swallows very thin liquids like water, she is protecting her airway and the liquids are going down the way they're supposed to.
She had her first MBS last May and we weren't even able to complete it because she had been off oral feeds for about 6 weeks while we waited to get it done. She refused to let any of the barium into her mouth, let alone swallow it.
Her second one was last September and she handled it like a champ. She swallowed all of the thicknesses that we tried with her. However, when she was given the ultra-thin and thin consistencies, she did not swallow them correctly and they pooled near her airway before she finished swallowing them. That's a bad thing because it puts her at high risk for aspirating, or having fluid enter her airway/lungs, which then leads to respiratory i…

Worn out

Q: What happens when you take a baby to 3 long appointments in one day? A: When her physical therapist comes over the next morning and tries to work with her, she acts like this:
Not to worry though, after a nice 3 hour nap, she was back to this:

My big 18 month old girl

Does turning 18 months officially make a baby a toddler? If so, then we have a toddler. Bittersweet. :) She spent her 18 month birthday going to appointments from 9-5. Very long day for both of us, but she was SOOOOOO incredibly well-behaved today. The girl I took to the allergist, OT, and surgeon today was a FAR cry from the girl who used to not be able to make it through a simple weight check without getting so worked up that she'd puke.

 Today, she was cute and sweet and charming. She said, "HI!" and smiled at people. She stood up on the big girl scale and let the MAs measure & weigh her. She sang to herself and yapped my ear off and read (destroyed) magazines during the HOUR that we sat in the allergist's office before he came in to see us. She cooperated with everything the OT did with her (except get in the ball pit, which completely freaked her out) and had a really great attention span today. (Possibly because Kaida wasn't there today. :) She took…

She's a muppet

Recently, I have taken some deceptive photos like this:
And this:
which make it look like Raya is eating. And while it may appear that she is eating a cracker, there is nothing but biting happening. No swallowing going on except for a few crumbs that happen to make it down the hatch. The rest of what she "eats" ends up like this:
I don't remember how old I was when I finally realized that Cookie Monster wasn't actually eating the cookie, but today I realized that although Raya is making GREAT strides in her willingness to put food in her mouth (mostly crunchy things that she can bite), she's pretty much like a muppet. She is making NO effort to swallow the crumbs and still goes to pretty good lengths to get them out of her mouth. It is still progress though and we're happy as can be with her recent interest in biting food.

We are also very excited about this:

This one was snapped about half a second after a giant stream of water shot out of her mouth: The pict…

AMT clamp=no more G tube/GJ tube/J tube leakage!

Raya has a new favorite accessory. Or rather, WE have a new favorite Raya accessory. It is this beautiful little piece of silicone (I think??):
What is it, you ask? It's called the AMT clamp. It keeps my squirmy and mischevious almost 18 month old from unplugging her feeding pump (either accidentally or intentionally) from her extension tube, which results in a very big mess. As in formula running into the bed all night from the feeding pump and bile running into the bed out of her small intestine. Both of which equal a big smelly mess in the morning. Not only that but it can be dangerous for a child to have a feed come unplugged at night. They lose all the formula that leaks out into the bed, which you have no way of measuring or knowing exactly what time it got unplugged. They also lose fluids that leak out of the unclamped extension tube from their digestive tract. AND, we've learned the hard way that some of those fluids that leak out (i.e. bile) can be very caustic on skin…