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Showing posts from May, 2012

Weight check

Vent week continues. I have always considered myself lucky when it comes to the office where Raya's specialists are because we haven't had too many aggravating experiences there considering the ridiculous number of times we've been there since January 2010. Recently we've had more irritating experiences though and today's was pretty aggravating.

Remember how at last week's weight check, I commented about how it's crazy some of the things people let their kids do in waiting rooms? Case in point, while we were waiting (calmly and without any rowdiness from Raya) there was a little boy about her age that was REPEATEDLY JUMPING OFF THE BENCH right in front of his mother who sat and watched him every time without saying a word or even seeming to realize that it was not safe or appropriate waiting room behavior. I don't let my kids do stuff like that. EVER. Not even CLOSE to that, and even my wild little Raya has never attempted anything close to that.

Fast fo…

Feeding therapy is not for sissies

*Note: The following post will probably be long, boring and consist of a lot of whining and complaining because sometimes I just need to, but I'm not looking for sympathy or compliments on how awesome I am and I do realize that a lot of people are much worse off than we are and am grateful for everything wonderful in my life, etc. :)

Sometimes feeding therapy just stinks. I love our therapist, I love my daughter, I'm forever grateful that someone decided to create feeding therapy, but sometimes I just hate it. Here are a few reasons why:
Progress is very slow and there's a lot of "one step forward, two steps back"I thought I'd gotten really good at being patient but have realized that there are many different kinds of patience and I have yet to develop the kind that feeding therapy requiresSome days, it feels like we're torturing her.Some days, it feels like we're torturing ME.Some of the things we have to do with Raya go against all of my instincts and…

Mommy needs a padded room. Make it soundproof.

AAAAHHHH!!! This sweet, darling child:
has been an absolute WRECK today. She had a good OT session this morning. She tried another swing that she's never been on before. It's shaped like an upside down T so she sits on it and has to hug it with her arms & legs. It's a lot of work for her weak core muscles. After she'd had enough of that swing, she got in the baby swing and tolerated a surprising amount of motion. Her therapist did forward & backward, side to side, and spun her in a circle. That is a LOT of very strong sensory input, which is why I don't give her a bolus feed of formula before OT on Thursdays. :)
When she'd had enough swinging, she got to ride the scooterboard. She scooted back and forth across the floor about 10 times picking up one puzzle piece at a time and putting them on the puzzle board on the other side of the room. She tolerated the whole oral motor program today so that was an improvement over Tuesday too, but that's pretty mu…

Craptastic

Rough week for Raya. A month ago at her GI appointment, we decided to cut her calories a little since we had overfed her into the 75th percentile. We reduced her from 990 calories a day to 930. We also decided to start trying a little milk (as in real milk from cows, not canned formula :) so we started with 1 ounce a day and worked her up to 4 ounces. It only took a couple of days before she was constipated. Then she had that funny little flu-ish thing and we swapped out all her formula & milk for pedialyte for 12 hours and then gradually worked her back up to full formula but never added the milk back in. This week, we started her back on milk.
*warning: I'm going to talk about poop* I think my girl may be lactose intolerant. On Sunday, she was up to a full 4 ounces and on Monday she had a very strange poopy diaper. We'll just say that it's not normal for poop to be stringy. Yesterday the child who normally poops once every 1-2 days had 4 diarrhea diapers. As in, nothi…

Expanding our palate

This weekend's menu has included:
6 tablespoons plain Greek yogurt (aka "sour cream" according to Raya)approximately 65 goldfish crackers6 small bites of cocoa krispiesflourraw pizza dough5 tablespoons fresh tomato sauce from the garden (with a little onion & basil pureed into it)a few nibbles of pizza crust1 tablespoon peanut buttersome tastes of chicken enchiladaNot all of the above was swallowed but she's been trying more often to chew things. Someday she'll realize that it's easier to chew when her mouth isn't packed full. :) And obviously, a couple hundred calories over the course of a weekend isn't enough to sustain life but that's what the G tube is for. :)

She never ceases to amaze me these days. A lot of what comes out of her mouth is unintelligible but every now and then she'll pop out with something that surprises us and makes us want to be more careful about what we say in front of her on the off chance that she'll repeat it.…

Raya's OT session

I've said it before and I'll say it again, Raya has been blessed with the most AMAZING occupational therapists. We are SO lucky to have worked with Miss Elizabeth for a year and now Miss Meredith! Before Raya started OT, I only knew about OT for the purpose of developing and improving fine motor skills and for helping to restore activities of daily living (ADLs) after traumatic injuries. I had no comprehension of what sensory processing disorder was or how OT would be beneficial in treating it. I feel like I'm understanding things a little more with each therapy session now. I've gotten into a rut of posting nothing but cell phone pictures on the blog lately so I took my real camera to therapy with us yesterday and thought I'd share what an OT session with Raya looks like. :)

This session was what we do on the days when Raya is having a lot of sensory-seeking behaviors (i.e. climbing on things, falling down without reacting to what should be painful, falling down or…

Professional Patient

Yesterday turned into a busy day for Miss Raya. She started the day off with an OT session that really didn't go too well. As we were walking back to the room, her therapist said, "Why is she walking funny?" She definitely was, and not just because her flip flops were in the wrong feet. She's used to that. :) Her base of support was wider than usual, her equilibrium seemed off, and she was toe walking, which has never been an issue for her. We agreed that it seemed like in her efforts to carry on activity as usual, she was having to work really hard to try and compensate for a sudden decrease in her perception of where her body was in space, which is a sensory processing issue. In addition, she looked very pale. She acted fine but just seemed a little off. Because of the vomiting on Tuesday, we didn't want to push her to the point of vomiting again just in case it wasn't a virus so we decided to have a calm therapy day. That includes massage, deep press…

Puke

All good things must come to an end. It's been a little over a year since Raya's last unprovoked vomit. It was a lovely run but it ended yesterday with this:


We had a really good session at OT yesterday. Twice a week in-clinic OT has been one of the best things that's ever happened to this sweet girl. It's absolutely amazing to watch her at therapy now. Some of the things she's doing with a smile on her face are things that terrified her just a few months ago. The girls' favorite thing yesterday was the inflatable jumpy thing that Miss M. turned into a tunnel:


They had a blast! It's also interesting to me to see the difference in Raya's level of interest and participation when Kaida is there compared to when she's not. She's a little more willing to do certain things when Kaida's doing them. Yet another reason why I think Raya needs to qualify for early invention preschool...

After OT we came home and flung all the dirty dishes from the tab…

Meltdown vs. Tantrum

You'd think that after 3 other kids, I would be a pro at this mom stuff but Raya finds ways to remind me every day that I still have a lot to learn. :) Today, the topic of her lesson for Mommy is that there is, in fact, a difference between a Raya the sensory mess meltdown and a Raya the toddler tantrum. Who knew.
Case in point: the innate desire to be independent and do EVERYTHING for herself, and a lot of things for me too. Sweet and well-intentioned but often counterproductive. This morning I really needed to go potty. (TMI, sorry) I told the girls I was going to go potty and to behave until I came back, and Raya immediately made a beeline for the bathroom so she could open the toilet for me. Then she wanted to get the toilet paper for me. I asked her to go out and close the door for me but she wouldn't budge because she REALLY wanted to help me. Sweet gesture, but for the LOVE, can't I just do that ONE thing alone?!? :) I ended up using a different bathroom (read: ran a…

The Twos and a preschool meeting

I'm not saying "terrible twos" because there are a lot of cute, fun things about 2 year olds, but holy smokes, Raya has most definitely hit "the twos"! We've seen all her life that she has a strong, feisty, determined personality but she's really kicked it up a notch lately. She gets it into her head that she's going to do something and there's just no stopping her. Or at least not without a giant meltdown. :) Her independent streak has hit epic proportions too. She MUST do EVERYTHING herself, even if she's not quite capable yet and everything is a wrestling match now. Diaper changes and getting in the carseat are the worst of it. She gets mad if I don't let her get out of the car by herself too. Yesterday she stood by the sidewalk and refused to come in the house because I helped her get down out of the car (which is an SUV that I don't want her to fall out of):
After 5 minutes of being extremely patient and nicely telling her it was…

Follow-up to medical supply storage post...

After some of the responses I got to my last post about how we store our medical supplies and after reading back through it, I feel the need to clarify a couple of things.

1. We haven't always had extras of things and we've learned our lessons about that. After Raya's G tube surgery we went for a month with the same 2 grimy extension tubes because home health & insurance took way too long to coordinate things after surgery. Then when home health actually did send us extensions, they were for the wrong kind of tube so we were stuck with the same old dirty ones until they got us the right ones. When Raya had an NG tube, we went for a couple of months with no extra because insurance would only pay for 1 every 30 days. It took several phone calls but I finally begged and argued enough that insurance agreed to allow home health to ship us 3 at once in case her tube got damaged beyond usability.
We've also had a couple of times where we got dangerously low on her formula …

How we store our feeding tube supplies

I was going to title this post "Where to put all that medical crap" but decided not to. :)

Back when Raya first got discharged from the hospital at 2 months old with an NG tube, I looked at the pile (wagon load) of supplies we brought home with us and thought to myself, "Gosh, I don't know where we're going to put all of this stuff!" Now I laugh at the thought that back then, I really felt like we had a whole bunch of stuff to store. :) We had a Kangaroo Joey pump & backpack, a week's worth of pump bags, IV pole, charger, a few diapers, half a bottle of sterile water, 1 roll of durapore tape, 3 cans of formula, and 36 2 oz bottles of ready-to-feed formula. Now 2 years and 3 months later, we've accumulated a LOT more and all we have is a feeding tube to manage. We don't have any other devices to manage (i.e. trach, port, PICC, Broviac, Hickman, ventilator, ostomy, oxygen, mobility aids, suction machine, catheter, etc.) so we definitely have a …