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Showing posts from July, 2012

Protesting everything

My girl had kind of a rough weekend. We now know what happens when she goes off of her Prilosec cold turkey. It was an unfortunate result of me forgetting to get prescription refills fromm the doctor at our appointment last week, the medical assistant I talked to at the doctor's office telling me to call the pharmacy and ask them to fax over a refill request, and the pharmacy not faxing it like they said they would. (side note, what's the point of having a refill line at the dr's office if someone's just going to answer it and tell you to call the pharmacy??)

I called the pharmacy yesterday and they said they had faxed the request but never heard back, so I called the doctor's office. They had never gotten anything from the pharmacy, which did not surprise me in the least, which was why I had called the doctor's office instead of the pharmacy to begin with. I know who I can and can't count on to get things done! Fortunately when I called the doctor's o…

Still hard, still worth it. I think. I hope.

Lately I've been clicking on those little links at the bottom of each blog post and reading through past blog posts. Sometimes I need that. I do it on my family blog too. It brings back memories, helps me remember where we've come from, and reminds me that my babies are growing up WAY too fast. Today while I was reading some old posts, I came across one called "Not easy but worth it". It was from almost a year ago and as I read through my own account of chiseling dried oatmeal-raisin and bean purees off the floor, feeling overwhelmed by the prospect of supporting the kids through another school year, giving enough attention to my dear little 3rd child, and trying to count calories and adapt to yet another change in feeding schedules for Raya, I couldn't help but laugh at the fact that not much has changed since then. We're rapidly approaching the start of another school year, I will still have 2 little girls at home (unless Raya gets into preschool, then I…

Cup, schmup. How about a syringe?

Who needs a cup/water bottle/sippy when you have an ample supply of 60ml syringes on hand? Certainly not Raya.

I think she drank more water this evening out of that syringe than she's ever had all at once before. She was so proud if herself for filling the cup, sucking water up into the syringe, and then squirting it into her mouth that she didn't even seem to notice how wet her shirt was getting. Or the floor. (Interestingly enough, she doesn't cough nearly as often when she drinks out if a syringe as she does when she drinks out of a cup.) I didn't mind the mess. It's nice to see her so pleased with herself. :)

The fact that she prefers to drink out of a syringe right now gave me a good laugh when I thought about the prospect of Raya showing up at school with a syringe instead of a water bottle. I wonder if the school has a policy on children drinking out of syringes.

After she had downed about 6 ounces of water, she wanted to eat some chocolate (um, ha ha, nice …

First GI visit

After 3 long months, we finally saw Raya's GI doctor again. It felt like we hadn't seen each other in years! Especially after waiting for 40 minutes to see her. :) It doesn't usually take that long and from prior experience, I know that if she's running behind it's usually because she's seen a patient that was struggling and needed extra time that day. Raya has been thatpatient many times before and I'm just glad she's not anymore. Fortunately today she was happy while she waited. She played a little tic-tac-toe in the waiting room:

And then we headed back to the exam room for her measurements. She has officially outgrown the infant measuring board so she got to be measured like a big girl with the ruler against the wall. She was 36 inches tall (91.44 cm) which was a growth of about half an inch since her last visit in April. I actually expected her to have grown more than that. She seems tall lately. :)

Her weight was back up to 13.6kg (30 lbs), which wa…

A momentous occasion

Raya ate an entire 6 oz jar of baby food today for the first time ever and she did it in one sitting. It has been marked on the calendar. I never imagined that I'd ever be spoon feeding my 2 year, 8 month old child baby food and be happy about it but it is what it is. :) The only reward I offered her was a bite of an ice cube or a drink of water after 3 bites of food. There was some gagging towards the end but I don't believe that it was theatrical in nature at all. I can fully relate to feeling like gagging when you're trying to swallow something you really don't want to swallow anymore and I think she'd had enough at that point. She finished it though and was very happy when I gave her the last chunk of ice and her cup of water. Hooray for Beech Nut pears and blueberries!

Lady the Snugglekitty

Meet Lady the Snugglekitty:

For a few weeks now she has spent most of her time every day in character as a kitty. If you ask her a question, she meows. If you tell her to do something, she meows. If you talk to her, look at her, hug her, put food in front of her, brush her hair, or pretty much have any form of interaction with her, she meows. (More interesting when you consider that she's never seen a cat close up in real life.) She even meows at her therapists. They don't like it and keep telling me we need to crack down on it so she'll stop. (it's not something we encourage, I promise) Sometimes the kitty act is endearing. Most of the time, not so much.

Since yesterday, anytime I say her name or call her by any of her usual nicknames, she'll say, "No! Lady!" So I've been playing along and calling her Lady. Tonight we went to her friend Whitney's birthday party and it wore her out so she was nice and snuggly when I was getting her ready for be…

Ripped from the headlines: Why Awareness is SO Important!

{Alternate title: Late night musings of an angry tubie momma who spent 2 hours working on this blog post only to have Blogger and/or an interruption in internet connectivity POOF it away so she had to start all over again}

{Alert: This will be wildly opinionated so feel free to have your own opinions but be respectful if you choose to comment on mine, please and thank you.}

Feeding tubes don't make headline news very often so when they do, those of us in the feeding tube community take notice. Especially when the story evokes fear and anger in our hearts.

A couple months ago, I wrote a scathing blog post about the story that ran on the Kathie Lee & Hoda hour about the use of NG tubes for the "K-E Diet" aimed at helping brides shed a few quick pounds before dress shopping and their weddings. This story was met with mixed opinions even among members of the feeding tube community. There was a question of ethics in the trivial use of a medical device, fear of what impact t…

Mess Maker

We had a messy weekend. First there was the unplugged feed which fed about 8 ounces to her bed and also let whatever was in her stomach freely flow out. (double layer waterproof mattress pads? yes please.)
Then there was the twisted up shirt incident:
Which wasn't really a mess but it was funny. It wasn't like that when I put her in bed.

Then there was the MASSIVE rainstorm:
(Just for the record, I was the passenger, not the driver.)
That was one mess we didn't mind. Rain like that only happens a couple times a year so we get pretty excited when big thunderstorms roll in.
Then there was the really big formula mess. Bigger than the aforementioned bed feeding mess. Sunday evening I was working on some things upstairs and when I came down, Raya started talking to me and repeating the same thing over and over. I couldn't figure out what she was saying until she had repeated herself about 20 times and then finally I realized she was saying, "Formula fell out." I though…

Cooling vest and more "Farties"

We live in a very very hot place. Very hot. Triple digits for 3 or 4 months in a row. Raya doesn't seem to handle the heat like the rest of us can. She sweats nonstop all the time, even in air conditioning. I know I get crabby and tired when I'm overheated so I started thinking that heat could be at least part of the cause for Raya's recent crabbiness. I had seen links on a couple of special needs-related facebook pages for cooling vests and decided to make her one rather than shell out $$ for one.

I am impatient when it comes to sewing. And many other areas of my life, but let's not get into that right now. I've made a LOT of things since I got my sewing machine 8 years ago, and I think I could probably count on one hand the number of times I've used a pattern. I like to wing it and a lot of the time it works out in my favor. :) For Raya's vest, I decided to trace a vest I had made for Cole's pirate costume a couple years ago that was about the right …


I'll admit it. Sometimes I just plain hate feeding therapy. I love our therapist. She's very good at what she does and we are very lucky and grateful to have her. Raya has made SO much progress since we started working with her and my feelings have nothing to do with our therapist, but I hate feeding therapy. I'm not even entirely sure why, but it could have something to do with the feelings of resentment and inadequacy I feel when I watch my 2 1/2 year old willingly open her mouth for her therapist and take a bite of something that she's never been willing to take from me. Or having to be taught how to feed my own child, who is my 4th child. Or the fact that it reminds me that my motherly love for her wasn't enough to make her be able to eat in the first place. Or the fact that we even NEED feeding therapy. Yeah, that might have something to do with it.

For the last 2 weeks Raya has been fighting this head cold and junky cough that thankfully she's finally over…

SPIO Compression Vest for Sensory Processing Disorder

This week is Circus Week at OT, so Raya got to dress up as a butterfly and play carnival games. She was irresistably cute with her little butterfly wings, tutu skirt and pigtails. Her therapist wanted to try out a SPIO compression vest on her again today so we decided to make an experiment out of it. On Tuesday when Donny took her to therapy, they put it on at the beginning of the therapy session and took it off towards the end. They thought there was a difference but it was hard to tell because it could have also been fatigue from working hard during her session. This time, we decided to leave it off for the first part of therapy and then put it on and see if anything changed.

WHOA...back up...what the heck is a SPIO?? According to the SPIO website, "Stabilizing Pressure Input Orthosis (SPIO™) assists patients with stability and proprioceptive deficits through deep pressure. Since deep pressure appears to be an important somatic input for balance and movement control, SPIO is…