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Showing posts from January, 2013

A few random thoughts.

There have been too many "big rocks" to fit in my jar this week. In case you've never heard of that analogy, it goes like this. You have a big jar that represents your life. Then you have a pile of big rocks, a pile of pebbles, a bunch of sand, and some water. If you put the sand in the jar first, you can only fit some of the big rocks & pebbles in before the jar is full. If you put the pebbles in first, same deal. You can't fit everything in. In order to fit all of it in the jar, you have to put your proverbial priorities in order and start with the big rocks, followed by the pebbles, then the sand, and finally the water. Then and only then is your jar really full.

The religion teacher that I saw give this demonstration compared the big rocks to the things that are the most important and urgent in our lives. Back then, I was a single college student and all I had to worry about in life was myself. The big rocks for me then were turning in my homework on time, sh…

5 things that have crossed my mind today

Here are 5 things that have crossed mind today, in no particular order:
1. Wow, I feel like the meanest mom ever. (repeated in my head every time Raya asked for corn chips, marshmallows, quinoa pancakes, peaches, and crackers and I had to tell her no)
2. Has Neocate always been this watery and white? (after 2 years on Peptamen, Neocate just looks wrong.)
3. How many different ways are there to serve Smarties and Dum Dums?
4. What is up with this diaper rash?! Oh, wait, I let her eat fries with crispy stuff on them even though I knew it probably had wheat. *hangs head in shame* (sorry, Raya, I just wanted you to be happy and you WERE happy while you ate them)
5. Oh yeah, that's what Neocate poop looks/smells like.


Elemental. That's the word of the day. (well, it was yesterday when we had a GI follow up. Today's word was enema but we'll focus on elemental for now.) Elemental is not my favorite word and it won't be Raya's either when she realizes what it means.

We had our longest ever stretch between GI appointments: 4 whole months! We saw her towards the end of September and made it clear until the end of January. We did have that little endoscopy/surgery in December and we've exchanged several emails and a couple of phone calls in the last month, but still, 4 months without an official GI visit. It seemed like forever.

Raya weighed in at 14.4kg (31 lbs 12.7 oz) and I already forgot how tall she was. She had gained 1 lb and 3 oz in the 4 months since we saw GI last. Not a great weight gain but she's still in about the 60th percentile for weight-to-height so we're not concerned. I'm really not surprised either considering how many nights I've had to drain w…

You know you're a tubie momma when...

You know you're a tubie momma when you go to Walgreens late in the evening and buy this: 2 saline enemas for a surprise sigmoidoscopy tomorrow morning, a bag of Dum-Dums because that's all she'll be eating for the next couple of weeks, and a bag of peanut butter M&Ms for Mommy. Too tired and too busy for an explanation tonight but there will be more information later on in the week. Wish me luck on my finals, I need it!

The dancing hands

There is no shortage of entertainment in this house and most of it comes from the two little girls. They are pretty darn funny, even if I am completely biased. They have great imaginations. Kaida's imaginary horse accompanied us to the grocery store last week and was kind enough to not poop on the carpet while we were gone. (because she was able to morph herself home while we drove in the car so she got there before we did.) Here is Kaida with her imaginary horse, Blue Streak, who eats salad, carrots, gummy bears, and oatmeal, and is not allergic to Wheat Thins but IS allergic to rice like Raya:

And here's one of Raya's dancing hands petting Blue Streak while we were grocery shopping:

I totally played along with them. (hence the picture of Kaida with her arms around Blue Streak's neck.) Hours of entertainment and it doesn't cost me a penny. It was a good grocery store distraction for both of them. Then Raya's dancing hands got in trouble for smashing the bread. A…

It smells like stomach in here.

A couple months ago, I wrote a blog post entitled Things I Hope the Neighbors Don't Overhear While the Windows are Open. We're rapidly approaching open window season yet again (woo hoo!) and I shudder to think what we'll be adding to that list. If someone had happened to pass by our windows yesterday, they would have heard things like:
Mommy! Raya's stomach is leaking!
Mommy, I just stepped in Raya's stomach goo.
Look, Mommy, there's green stuff in my tube!
Mommy, can you clean the formula out of my toes?

And then later:
Mommy, it smells like stomach in here. Did Raya puke or did her stomach just leak?

Thankfully, it was rainy all day so the windows were closed. Although open windows would have helped get rid of the stomach smell. And the answer to that question is that her stomach leaked. A lot. All over the place.
The extension tube came unclamped. She insisted that, "It did it itself," but I'm not sure that I buy that story. If only this picture coul…

Educational visit to the allergist

The food allergy saga continues. Since Raya FINALLY tested positive for a few food allergies in September, we've done pretty well with avoidance of those foods. There have been a few exceptions when we've either decided that the risk of a reaction was low enough or just didn't want to break her heart so we let her have a small amount of something. Some of those exposures have been fine but others have blown up in our faces. To date, she does not have any anaphylactic allergies, but she has tested positive for peanuts, tree nuts and shellfish which could all potentially become anaphylactic for her.

(backing up...) Ok, so immunology is something that I'm still (and probably forever will be) trying to wrap my mind around. I've read textbooks, written essays, answered test questions, and researched on the internet but there's a lot to learn and understand. There are some tricky aspects to food allergies. For one thing, a food allergy can have very different effects …

3 years later...still a tubie

This weekend we passed the 3 year mark of when Raya got her NG tube. I let it come and go unannounced. I didn't feel like commemorating it and it felt good to not acknowledge it. I just wasn't in the mood for it this time. Even if she was the cutest little red headed baby with a tube up her nose that you ever did see.

When she got her NG tube, it was not my choice. I was stressed, I was scared, I was frustrated, I was confused, and I was sad. (and completely grossed out by the fact that one of our roommates during that hospital stay had head lice but that's a story for another day) There's a line from a song that says, "Every new beginning comes from some other beginning's end." Raya getting an NG tube was the end of motherhood as I had previously known it (i.e. being in charge of what, when & how she was fed and being able to handle her care without a herd of medical professionals) and the beginning of something completely unlike any challenge I had e…

Weekend visitors

We were so happy to have Raya's grandparents come into town this weekend! We only get to see them once or twice a year so the kids get really excited when we get to see them. They came on Friday evening so they could be here for Cole's baptism on Saturday. The kids spent all of Friday evening snuggling on the couches and playing with them.

On Saturday, we all got dressed and went to the church for Cole's baptism.

After the baptism, we had all of the family & friends that came over for lunch and birthday cake. It was a great day and we really appreciated everybody's support. The kids had a blast playing with their cousins & friends but by the time everybody left, Raya was worn out. She didn't seem to be overwhelmed by the noise & excitement but it seemed to zap her energy.

She really loves her grandpas. Friday night and Saturday morning, she had been playing with the grandpa that was visiting for the weekend. Then on Saturday afternoon, the other grandpa…

Going, going, gone!

I'm happy to report that Raya had a productive day at feeding therapy today. Before we left to go to the appointment, I asked in a thinking-out-loud sort of way, "What food should you bring to therapy today?” To which Raya replied, "CHEE-YIPS!!” To which I replied, "Nope, no chips. How about peaches?" We decided it would be a good idea for Kaida to bring some peaches too so that the girls could eat together. That didn't exactly happen because Kaida wolfed hers down in about 7 seconds, but it was a nice idea. :)

Raya started out slow. She got peach juice on her fingers and really REALLY wanted it off. She's funny about having her hands wet/dirty. Sometimes she doesn't even seem to notice or care and other times she wants it cleaned off YESTERDAY. She started taking bites a little at a time with a lot of playing and goofing around in between.
Slowly but surely, she chipped away at her cup of peaches...

...AAAAAAAND she got distracted. A lot.

But finally …