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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.**


Thursday, February 24, 2011

GI visit

Raya got to see our favorite doctor today (and I mean that, she really is our favorite :). Luckily, a nice friend took Kaida to her house so she didn't have to go with us because wrestling with Raya is just about as much fun as I can handle in one appointment. :)

Anyway, we had a good visit with the doctor, meaning that there was minimal vomiting during the appointment and the doctor and I could pretty much hear each other over Raya's crying/screaming. :) Here's a brief rundown:
  • Raya weighs 23 lbs 6 oz this week, which is 8 oz less than last week and only 1 oz more than when she was there in January. Not sure why she lost weight but the doctor wasn't concerned. She has a little extra cushion. :)
  • We're still battling the worst diaper rash ever (we're talking blisters & bleeding, TMI) so we now have prescription #3 for that.
  • Dr. S hadn't heard about the inconclusive allergy testing & didn't know that any of Raya's meds would possibly supress histamine reactions.
  • After a little over a year on Neocate, we've decided to try something that's "a little less elemental" than Neocate. Over the weekend, we'll gradually switch her over to Peptamen Jr. and see how she does with it since it's a milk-based formula. Should be interesting & fun, right? Especially given how well Raya's body adjusts to change. ha ha. :)
  • Since she lost half a pound and will hopefully be switching formulas, she'll go back for a weight check in a month and then back to Dr. S in 2 months. It feels good to be on a lower-maintenance schedule. We went from seeing the GI doctor every week to every 2 weeks, then once a month, then every 6 weeks and now we get to go 2 whole months. :)
In other news, Raya's been taking interest in helping out around the house. She "helped" us put her crib together so she didn't have to sleep in the pack & play in the closet under the stairs anymore. (we just moved. under normal circumstances, we don't put the children in closets)

She was all smiles until we tried to take the bolts away.

Her torticollis reappears when she's concentrating on something. :)


She got a little upset when she couldn't get the screwdriver out. :)


Monday, February 21, 2011

Having difficulty adjusting

I don't know where my happy/content child went but I'd like her back. It started last Tuesday when she had those 3 appointments in the same day, which obviously was a lot to ask of a 15 month old but that's just the way it worked out. On top of the 3 appointments, we switched from giving her 11 oz of water/day in her G tube to giving her 7oz water+1 oz formula in her G tube the same day. She threw up 4 times that day & a couple times the next day and her sleep patterns have changed for the worse this week. Further disrupting her life, we moved on Friday and it seems to have thrown her for another loop. I suppose that could have had something to do with the fact that we weren't able to clear enough room for her crib until today so for the last 3 nights, she's slept in the pack & play in the closet under the stairs. She didn't seem to mind it but once the big kids wake up and run down the stairs, it's a little tough for her to sleep. For pretty much the whole past week, she just wants to be held all the time and if she's not being held, she's crying. I hope she gets a good night's sleep and adjusts soon so we don't all go crazy. :)

Wednesday, February 16, 2011

Conclusively inconclusive

Have I used that title before? I feel like I have. Yesterday was a very busy day for the little girl. She started off the day at her pediatrician's office for her 15 month well check, where we found out that she has an ear infection. Luckily since she didn't have a fever, we were still able to get her 15 month shots. She wasn't a fan of that, of course. Her official 15 month stats are 23 lbs 14 oz (64th percentile) and 30 inches (30-50th percentile, depending on which website you look at :). In other words, she's a healthy weight and is WAAAAAYYYYY bigger than the other kids were at her age. Kaida's only 4 1/2 pounds heavier than Raya right now and she's 2 years older. :)

Aside from the tubes, she looks pretty darn healthy to me :)
After we were done getting shots & a prescription for the ear infection (that explains the fever she had the other day and the return of her runny nose, by the way), we headed to the pharmacy to pick up a couple of her prescriptions. For once in their lives, the pediatrician's office was actually running on schedule (seriously the first time that's EVER happened in the 5 years we've been going there) so we had time to kill between the pediatrician & OT.
I should also mention that we made another change to her feeding regimen yesterday so that instead of putting just water in her G tube, we're doing 7oz water+1oz formula mixed together. We still do 30ml every half hour but we're testing her a little bit to see how her body handles a tiny bit of formula in the water.
As good as her OT went last week, that's how not good it was this week. She really wasn't in the mood to cooperate. Who could blame her with an ear infection & 3 shots though. Her OT put her in a high chair and dumped some applesauce on the tray & tried to get her to play in it but she was completely uninterested. She slapped her hand in it once and that was it. The OT stacked up some blocks in the applesauce & she whacked them down a couple times, but then she was just DONE. As we were cleaning her hands off, I don't know if it was because we had made her play with a texture she didn't like or because of the formula in the water, but she gagged really loud and then just started puking her little guts out. She played for a little while after that but then she just ran out of steam towards the end. Then we hurried home so I could get the food ready for her allergy testing. Raya wasn't hooked up to her backpack for the first part of the appointment so rather than try to hold her the whole time, I let her amuse herself:

So back to the conclusively inconclusive thing. That's pretty much the results of her allergy testing. We did fresh food scratch testing with 10 foods and they also did a negative control and a positive histamine control. This was my first experience with fresh food testing but it was the same as regular scratch testing only with samples of the actual foods. This is what it looked like:
As you can see in the picture, not a single one of them swelled up at all, including the positive histamine control that's SUPPOSED to swell up. When the doctor came in, he was kind of scratching his head because that's not supposed to happen. He said something to Raya like, "Why are you making this difficult?" and I said, "Because her name is Raya and that's just how she operates." Seriously, kid, can't we just have ONE test show helpful results?? After reviewing her medications again, he thinks that the one she's on to keep her from dry heaving all night/morning long is supressing the histamine reaction so it threw off the results of the test. We discussed the options and decided that for now, we can either start with oatmeal, rice, applesauce and bananas one at a time and VERY slowly (like 1/8tsp for 3 days, then 1/4tsp for 3 days, then 1/2tsp, etc. until she's getting a full serving) and see how she does with it OR if her GI doctor wants to, we can pull her off of the med that's affecting the test results for a few days and repeat the testing. Since she goes to her GI next week, we're going to hold off on doing anything and wait & see what she wants to do next.
By the time we were done with appointment #3, Raya had been poked/scratched 15 times and thrown up 4 times and just wanted to go home. (and by the way, I never would have scheduled 3 appointments on the same day intentionally but sometimes you have to take whatever appointment you can get even if they're all on the same day)



And finally, I might just be a big dork but I found this amusing:

Thursday, February 10, 2011

A great week of therapies!

Raya is 15 months old today and I'm so proud of her this week. She had all 3 of her therapies and she did really well with all of them. OT was on Tuesday, FT was yesterday and PT was today. At OT Raya reaffirmed her unnatural love for the sandpaper board and we've actually been able to use that to our advantage. I don't like to use the term "manipulate" but in a way, we can manipulate her to touch textures she's aversive to by letting her stand or sit on the sandpaper board while she touches the things she doesn't like. It's like her little safety zone. :) I joked with her OT that we should just get a sandpaper board at home and put a border of hardwood around it (which she's scared of) and we'd never have to worry about her wandering around the house & getting into stuff. :) Anyway, she was a really good sport at OT and we were able to push her limits.

Feeding therapy yesterday was probably the best session we've had the whole time she's been getting FT. We're only doing it every 3 weeks right now because she's just not ready to push harder than that but she did great yesterday. She played with crackers & cracker crumbs and with water. (there's always a big mess to clean up after FT:) We were able to get her to taste the cracker crumbs (which she spit out almost immediately) and her therapist got her to willingly accept drops of water out of the syringe.
By the end of the session, she was reaching toward the syringe and making a noise to let us know she wanted more. It was kind of like a little game to her. I think she liked it but she doesn't get the whole concept of water being essential for life and that she's supposed to drink it and not just play with it. :) We had a little piece of sandpaper that we rubbed on her feet a little bit while she was sitting in the high chair and after the FT put it down on the counter, Raya grabbed it and tried to rub it on her feet by herself. Silly girl!

PT went really well this week too. Her PT brought a new thing with her that Raya (and Kaida) really liked. It's the Ab Dolly:

Raya practiced backing up to it and squatting to sit down on it and then standing back up. She thought it was pretty fun. Then her PT gave her a little ride on it, which is great for vestibular input (to help increase her body awareness). She was a little nervous with it at first but once she got used to it she thought it was great.
She also brought a balance disc for her to stand on, which she LOVES to do. One side of it is smooth and
the other side is bumpy. The first couple days her PT brought it with her, Raya wouldn't really touch the smooth side and she really liked the bumpy side but now she's getting used to the smooth side too. It's nice to see little bits of progress like that. It's funny the things you get excited about when you have a child with delays or issues that are out of the ordinary. :)
The other thing Raya's PT did with her that we haven't done before was make her lay on her tummy on the balance disc to help with core strength. It's really hard to get her to lay on her stomach because she has a big fat GJ tube sticking out (and they call it a "low-profile feeding device", ha ha). It worked pretty good laying her over the balance disc though because the tube was in front of it so it wasn't squished. She laid on her tummy & played with toys while the PT kind of squished her legs between her knees to keep them together. It worked well & she didn't squawk about it. :)

Saturday, February 5, 2011

Still puking but still not puking the water (YAY!)

The girl had a little tougher day today. I'm not 100% sure why but I think today it has to do with the fact that on Saturday morning, Daddy doesn't have to leave for work at 5:30am so he didn't shut her pump off until later. I don't know what it is about 5:30 but it seems to work for her.
She threw up 4 times today but none of them were when she had water in her stomach. They were all during the formula feeds with the pump or else on a break from all of it. Perhaps we're on to something. I don't know why but whenever I run the water into her G tube I feel like I'm doing something good for her. Hopefully it keeps working. Her nurse will be back in the office on Monday so I want to talk to her about it & see what the doctor thinks we should do next, or if we should just keep doing what we're doing until after the allergy testing the week after.

Thursday, February 3, 2011

Probably jinxing myself but...

We are on day 2 of the every-30-minute-for-5-hours water bolus feeds and things are still going well. She still hasn't thrown up when I've given them to her (it helps that she's pretty much over her cold/cough, knock on wood). Today I even did 7 in a row (30ml/half hour for 3 1/2 hours) and she was fine. I'm going to fiddle with things a little more over the next few days and see if maybe we could do some formula in a few of them.
Aside from tolerating the actual feeds (or drinks, whatever you want to call them :), she also seems to be generally happier during the day. She's never been on a very consistent schedule because it's hard to do that when her schedule is dictated by therapy appointments & doctor appointments & whatever the rest of us have going on but yesterday and today she's been really happy and cooperative, even when it's naptime. I put her in bed after her 7th water bolus had time to settle and hooked up her formula in the feeding pump while she took her nap. She had a nice 3+hour nap for 2 days in a row, which is not normal for her, and when she woke up she just played happily in her bed until I came & got her. Now she's playing in her little cage play area in the living room while the rest of the formula goes in and she's as happy as can be. I hope this lasts but even if it doesn't, I'm very grateful for the 2 happy days she's had! :) (especially because I have caught something, presumably from any of the 4 sick children I've been taking care of, and I feel terrible today) I'm feeling optimistic about this because even if she still has to have her actual "food" through her J tube for a while, just being able to give her stomach practice with the fluids is awesome and being able to allow her the freedom to walk around the house and play while she's not hooked to the pump is priceless. (even if she IS getting into EVERYTHING :)

Wednesday, February 2, 2011

OT, Textures, Walking, and G-tube Feeds

OT/Textures
I took the camera with me to OT yesterday and I'm glad I did. Raya was in a good mood and was very cooperative. :) Here are some of the things she did at her appointment yesterday:
Hugged the 2lb medicine ball while trying to decide whether to keep holding the block or put it in the giraffe and ignoring Ms. E who was trying to get her to touch the soft, fuzzy board.

Rubbed the sandpaper board. Became obsessed with the sandpaper board. She LOVES rough textures.

Stood on the sandpaper board while trying to get the silly putty off her hand and trying to decide how she felt about the silly putty. The sandpaper board was like a little sanctuary for her while she tried things she wasn't sure about.

Playing with drums while avoiding Ms. E's request to touch the soft fuzzy board by standing on the sandpaper board instead.
FINALLY touched the soft fuzzy board! You should have seen her reaction to the smooth hardwood floor board that's touching her feet. She wanted NOTHING to do with it.

Being rewarded for her hard work (i.e. touching the fuzzy board) by getting to play with the drums. If only Ms. E wouldn't put silly putty on top of them. :)
So far, OT is going great. Most of the time, Raya doesn't realize that the person playing with her is actually pushing her to test her limits and making her work. (not the case with PT. She totally gets that the PT is working her! :) She definitely has reservations about touching certain textures. Watching her at OT is interesting. It's amazing to me the lengths she will go to to avoid certain textures and to seek out others. I think we had about 6 different texture boards out and the one that she wanted to sit on to play was the sandpaper. Of all the pleasant, comfortable things available to her, she wanted the rough, scratchy sandpaper. I can't imagine kneeling on sandpaper with bare feet but she seemed really comfortable on it. When she touches some of the other textures, like the hardwood, her reaction is what can only be described as fight-or-flight. She backs up and moves away like a cat avoiding water. It's very interesting to watch. She loves to hold heavy things like the 2lb ball, and she loves to put her hands & fingers into holes of any size she can fit them in. (like the hole in the middle of dvds)

Walking
In other news, for the last week or 2 she's been walking pretty much all the time. She doesn't crawl much at all anymore. She walks a little crooked & usually has her left hand up to help with her balance but she's doing really well with it. A few months ago I'm not sure that we expected this much out of her at this point. :)

You can tell that she's concentrating on something other than walking because her torticollis looks really bad in this picture. Her tilt always looks bad when she's concentrating on something new. :)

Always yelling about something. :)
G tube Feeds
I did a new experiment today with her feeding schedule. Normally, we mix up a full 24 hours' worth of formula every evening and add in the additional 320ml of water that her doctor wants her to have. That way we have the whole day's worth in the fridge and when it's gone, she's done for the evening. It's much easier to keep track of that way & a lot less work not having to mix up formula all day long. Anyway, last night I mixed the formula but didn't add the extra water. We fed her overnight like we usually do and Donny turned off the pump before he left for work around 5:30. At 8:45 I started with a 30ml bolus feed of water through her G tube. 30 minutes later I gave her another one. I did 6 of them in a row every half hour for 3 hours. After I thought she'd had enough time to drain the water from her stomach, I resumed her formula feed in the J tube with the feeding pump and put her in bed for her nap. After she woke up, (from a 3 1/2 hour long nap!) I waited for her to run out of formula and then gave her the rest of the water she needed for the day 30ml at a time every half hour. It went REALLY well. I was surprised. I even put 20ml of formula in one of them and she did fine with that too. There was one time in the morning when I thought she was going to cough too hard & then throw up but she didn't. She almost threw up with the last feed in the evening too but she kept it in. I'm not holding my breath until we have a little more success with it but this is a step in the right direction. At least we know she can "drink" water without puking.

Tuesday, February 1, 2011

Where the blood was coming from

**Once again, I'm warning you that this post will talk about blood and stomach drainage and have a gross picture.**

I posted last week that there was blood draining from Raya's G tube again and then I posted that the bleeding had stopped. This weekend we found out where the bleeding was coming from. I was changing her diaper Saturday morning, which is when I usually check & change the gauze around her GJ tube. I glanced at it and saw that it looked a little bit pink, which is unusual. Normally, there's nothing but a little bit of drainage from her stomach (greenish & kind of looks like what you blow out of your nose when you have a cold). I carefully took the gauze off, which normally doesn't bother her, but she flinched & started fussing. When I pulled it off, I saw a rather large lump of tissue sticking out of the stoma (hole in her stomach where the GJ tube is). I never actually measured it but I'd guess that it was sticking out about 1cm from the hole and was kind of rectangle shaped. The granulation tissue she's had before was always round and grew out around the entire stoma, it didn't stick out of just one spot like this was. It was raw & bloody and from the way she was acting I could tell it was painful. There wasn't much I could do about it except put aquaphor on the gauze to keep it from sticking to it. (I was going to take a picture but she was too squirmy.) I thought (very briefly) about using a silver nitrate stick to cauterize it but it seemed painful enough already and I didn't want to aggravate it. We decided just to watch it over the weekend.
So fast forward to yesterday, I emailed the nurse yesterday morning and told her about it & asked her if we needed to do anything about it or just leave it alone. Then an hour or 2 later, I went to check it and change the gauze again and the whole thing just came off. It was not what I was expecting and it was gross but it solved the problem. :) And because I wouldn't be me if I didn't post a gross picture every so often, here it is. (This is after it had shrunk over the weekend & gotten darker in color.)
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