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Showing posts from September, 2011

Chubby Bunnies

We let Raya try marshmallows today. Turns out she has a difficult time with them. They're light & fluffy so she can't feel them in her mouth as well, so she stuffs and stuffs until there's foamy white marshmallow goo oozing out the corners of her mouth:
Of course the other 3 thought she was hilarious so they kept egging her on. After the big kids stopped laughing at her antics, she started to get anxious and she didn't think it was funny anymore. She got a "yuck" look on her face and I asked her if she wanted to spit them out. She walked straight over to the garbage can and spit out everything she could and then let me wipe off the rest and clean her up. It was a fun little experiment but no more marshmallows for Raya. :)

3 appointments in one day

Yep, 3 appointments in one day. I try not to do that to myself but sometimes it's unavoidable. It makes for a long day but after almost 2 years of this, the little girls are used to having a crazy day once in a while.
The first appointment was a weight check at the GI clinic, which we pretty much failed. Raya has only gained 2 ounces in the last month and her height pretty much stayed the same too. Honestly I wasn't too surprised and I'm just glad she didn't lose any. The girl's had a rough couple of weeks!
Since our darling nurse had her baby, my line of communication with the doctor is...hmmm...not what I've been used to, and I'm trying to be patient while new people learn the ropes. I had hoped to meet the new nurse today but we were running late & didn't have time. I think it would help if we could get acquainted.
I had the MA that did the weight check write a note to the doctor about the increase in reflux symptoms, including but not limited to: …

Shaving cream

One of the strange after-effects of Raya being taken off of amitriptyline is that she has regressed on some of her sensory issues. It seems like some of her senses have been heightened and things that she is more aware of things that she had previously gotten used to. She had gotten to where it didn't bother her to have her hands covered in sticky food. For example, she had recently started eating little chunks of soft, canned peaches that she could pick up with her fingers. A few days ago though, the big kids were eating some so Raya wanted some too. I cut them up and put them in a "bwayt" (plate=bowl) for her like she wanted, but she touched one piece of peach and then tossed the bowl on the table and wanted her hands washed on the spot.
I talked to her feeding therapist about it on Thursday and she suggested having some "messy play" at OT on Friday, and that we did. :) No sooner had I said the words "messy play" than Miss Elizabeth produced a dollar…

Locked in

Thursday was the day I was going to get some craft/sewing projects done for upcoming birthdays & a little jump start on Christmas, but as is often the case when you have kids, my plans went out the window. :)
I had taken the 2 big kids to school and the little girls and I were going to play upstairs for a while after we cleaned up breakfast. Raya was in Ashtyn & Kaida's room and I was in my office, and Kaida (4 yrs old) decided she wanted to play the Nintendo DS. I told her she couldn't play it until later, so she started to throw a fit. Her fits are rather passive-aggressive in nature. Instead of lashing out at me, she does things she knows she's not supposed to. In this case, it was locking her bedroom door, coming out into the hallway, and closing it with Raya still inside. Oh, and by the way, the bedroom doors in this house have exterior doorknobs on them to which there are NO keys. Yeah. So Raya's locked in her big sisters' bedroom and I have no key to …

Doing better. Whew.

I'm very happy/grateful/relieved to report that Raya had a MUCH better day today. She tolerated her full feeds today and finally ate something other than crackers. It was vanilla yogurt that nobody else likes because it's not sweet at all and very tangy. She ate about 7 or 8 tablespoons so heck with the possible dairy allergy. :) If it doesn't make her puke and she wants to ready it, I'll let her eat it. She has lost some ground but she'll move st heer own pace and I'll let her.

She's been much happier today too. Every time she sees me, she says, "Hi/bye Mommy!" She said it at least 15 times in a row when I left to go to the grocery store.:) She did wake up screaming after only half an hour at nap time today but bed time went much better too. Big sigh of relief!

What it's like to take a 22 month old off of an anti-depressant

I'm happy to report that we seem to be past the worst part of Operation Wean Raya Off Amitriptyline. (knock on wood) If you missed the first part of the story, click here. She has been MUCH better the rest of the week after spending the ENTIRE day Wednesday crying. I have always been pretty vague with information about the medications she's on, but since one of the main purposes of this blog is to share our story with others who might be having similar experiences, I decided to go into a little more detail about this.

For starters, amitriptyline is not a drug that can be discontinued abruptly. If it is, there are risks of heart arrhythmias and other serious complications. Because of that, we tapered her off of it over the space of about a month. She was officially finished with it on September 4th.
When I talked to the nurse on Wednesday about the problems we were having, she told me that the doctor would probably want to put Raya back on the medication and that she'd talk …

Wild ride

What a crazy week this has been for Miss Raya! It seems that I may have been premature in my celebration of weaning Raya off of amitriptyline. We THOUGHT she was doing fine without it, but then we started noticing little things. She was just acting funny. And she started spitting up again, which we thought at first was from the stuffy nose she'd had a couple weeks ago. She wasn't as alert & active as she always is. On Friday when her feeding therapist came, she kept asking me if I was SURE that Raya was okay because she wasn't being her normal silly, busy, interactive self. She just sat there in the high chair with her lips closed and stared at everything but us. She ignored us when we asked her questions that she usually answers. She did still open her mouth when I asked her what was in it though. :) It was really strange how bashful she was acting towards her therapist though, especially since she's been seeing her since she was 5 months old so it's not like …

Taking Walks & Life Lessons

With the unrelenting, blistering, scorching heat in Arizona, we haven't had many opportunities to just go outside and take a walk in the past 4 months. It's just no fun at all when you start sweating the second you walk out the door. We had a special treat on Friday though. It was only about 100 degrees, overcast, and breezy. PERFECT conditions for taking a walk. Not only that, but there was a little bit of thunder here and there. Raya and I were home alone for the afternoon so I put shoes on her and we went for a walk. I should mention that her feeding pump had malfunctioned overnight and failed to give her ANY of her feed, so she was tethered to her backpack all day long to make up for it. I think the feeding pump does that to us every so often to keep us humble and remind us how good we have it right now. :)
Raya didn't seem to mind at all though, she just wanted to go outside. She jabbered away as we walked down the sidewalk toward the park. Every few steps, she would …

What happens when a G tube balloon pops

It's funny how every time I have a paranoia about something with Raya, eventually it happens and usually turns out to be not as big of a deal as I expected it to be. (Add that to the list of lessons I've learned from having Raya. :) The day I brought her home from the hospital with the NG tube in her nose, I was SO afraid she would pull it out and I'd have to put it back in. I knew it was inevitable that I would have to put one in her nose at some point, but I dreaded it. Then it happened. I think she caught it on her little pinky finger and pulled it out. I wrapped her up like a little burrito, got my tape and stethoscope ready, and went for it. It really wasn't as bad as I had anticipated. Which is good since I ended up doing it SOOOOOOOO many times.
Then she got her G tube and I was given the "what to do if it gets pulled out" speech before we left the hospital, which left me feeling paranoid. Thank heavens the non-balloon button she had first never got pu…

Adios, Amitriptyline!

And don't let the refrigerator door hit you in the butt on the way out! Raya had her very last dose of amitriptyline last night. As I drew up that 0.1ml of clear liquid in the syringe, I had 2 thoughts. #1: What in the heck kind of difference does 0.1ml of ANYTHING make?? (Just FYI, 5ml is 1 teaspoon, so for comparison's sake, 0.1ml is a teeny tiny fraction of a teaspoon.) Thought #2: Sigh, we've come such a long way since we started her on this stupid but wonderful medication...*sniff sniff*
I've always had a love-hate relationship with amitriptyline. One of the GI doctors started her on it when she was in the hospital for 2 weeks last October. She had just gotten her GJ tube and we were only expecting to be there for 2 or 3 days at the most, but then she started vomiting huge amounts of bile so we ended up being there for a lot longer. Anyway, she was puking her little guts out morning, noon & night even though she wasn't being fed into her stomach anymore so …

First trip to the dentist

Raya got to have her first dentist appointment today. She's starting much earlier than any of the other kids did but the other kids didn't throw up 4 or 5 times a day for 18 months. :) Ashtyn (our oldest) spit up like nobody's business but she didn't get her first tooth until she was 14 months old so it wasn't an issue with her. Anyway, the 3 older kids had appointments to get their teeth cleaned today so when I checked in, I told the receptionist that I wanted to schedule an appointment for Raya to get hers cleaned. She checked with the hygienists and said that we could just do Raya's today too if I wanted. One less appointment to drag her to? Yes please!

I had no idea how it would go. She's rather unpredictable these days. She LOVES the GI doctor's office now but the dentist's office was a whole new environment with a lot going on so she had NO desire to lay still and let somebody touch her mouth. She sat on my lap facing me and laid her head on th…