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Showing posts from January, 2014

Where has January gone??

Time flies when you're rapidly approaching your due date. I've been scrambling trying to get as many things checked off of my to-do list as possible, and it was going fine until 5 out of the 6 of us caught a cough a couple weeks ago. It's a dry, unproductive cough that wakes you up at night and doesn't respond too well to cough suppressants. I finally got desperate this week and begged my OB for SOMETHING to help me get some sleep after having a few miserable nights in a row where I was awake more than I was asleep. Hopefully we can all get rid of it before we have a new baby in the house.

Raya was starting to get over her cough but then she spiked a fever yesterday and still has it today, so either she's caught something else now or her cough is morphing into something else. It's so sad when kiddos don't feel good.

She's on about her 10th episode of Jake and the Neverland Pirates so far today and hasn't moved off the couch much. You know she doesn…

A little bit of reflection on Raya's 4th Tubiversary

If someone had told me 4 years ago this week that Raya would still be getting 85% of her calories from tube feeds 4 years later, I wouldn't have believed it. And I probably would have cried. The last 4 years have been filled with things that I could never possibly have envisioned for Raya as a newborn (or infant, or toddler, or self-proclaimed "big girl"), and the feeding tube has been the most visible of those things. (well, except for the plagiocephaly helmet. that thing was pretty darn visible. and smelly.)

I remember distinctly some of the thoughts that went through my head the day that we went home from the hospital with the NG tube. It was Saturday, January 23rd, 2010. Raya had been in the hospital since January 18th and had gotten the NG placed on the 20th because she refused to drink the Pregestimil formula they had put her on. I didn't blame her one bit. The switch was necessary but that stuff was just plain foul, especially when compared with breast milk. I …

Not exciting but still noteworthy

Raya has not really ever slept through the night. If it ever happens, it's a rare thing. When she was younger, she woke up like clockwork every night between 10 and 11 to vomit. When she outgrew the vomiting, she still woke up every night sometime between 10 and midnight. I suppose this is one area where being a night owl pays off for me because I'm not usually asleep by then anyway so she's usually not waking me up when she wakes up because I'm already awake. Staying up a little later than I want to doesn't feel as bad as sleeping for an hour or two and then waking up with a crying kid. (that will be resuming soon enough)

She didn't sleep through the night last night either but she did sleep in her own bed all night long. She went to sleep in her bed at the usual time (as opposed to falling asleep on the couch) and even slept through me giving her meds at about 10:30 or 11. At that point I debated whether to A. go to bed and sleep for 45 minutes until the pump…

Weight check & a pretty good day

Raya had her weight check today. Bright and early. At 8:00. What was I thinking. At her last GI visit on December 16th, she weighed 15.1 kg, which was only about a 3 ounce gain since the previous visit about 3 months earlier. One ounce per month is not a good rate of gain for a 4 year old. Just FYI. Today, she weighed 15.2 kg, (about 33 lbs 8 oz) which means she gained about another 3-4 ounces in the past month. That's still a little lower than her doctor probably wants, but it's a whole heck of a lot better than a net gain of 3 ounces in 3 months. Hopefully the trend will continue and the oral intake will increase to make up a few more calories.

I've been toying with the idea of not doing a tube feed first thing in the morning (or worse, doing it super early in the morning which would require me to get up super early in the morning and start it...MOOG, where is that darn delayed start feature I've been asking for??). The reason I've been thinking about that is bec…

Milestones of the fine motor variety

I've whined a lot lately about various things but I promise, that's not all I do. :) Raya is really turning into a big kid these days and she's hit some pretty exciting milestones in the past week.

She's been going to preschool for 1 year and 2 months now. This year, the kids start out every single morning by writing their name on a laminated card with a dry erase crayon. At the beginning of the year, the kids all started out with cards that had each of their names in large letters. The point was for the kids to come in and find their name and then trace the letters. Once they had mastered tracing the letters in their names, (as well as a 3-4 year old can master that) they moved on to a card that had their name in small letters with space below for them to write the letters on their own. When they had that down, they moved on to a blank card. For probably 2 months or more, there have only been a couple of kids that were still using the cards with their names in small …

Food Woes

Food can be such a beast. Sometimes when I think of Raya and food, I picture the food a little bit like a Gremlin. It's hard to say on any given day whether we'll get one of the soft, furry, cute ones or the scary, dragon-looking, havoc-wreaking kind. Some days her food is like this:


Aaaaaand some days her food is like this:


(what can I say, I'm a visual person)

On some days, feeding therapy brings out the best eater in Raya and on others, she fights it as if we were trying to convnce her to eat toxic waste. It can be difficult to know how hard to push her on the harder days because we don't always really understand why she's fighting it. It's easy to forget that a child being able to talk does not equal a child being able to verbalize complex concepts and emotions. We can't ask Raya why she's suddenly refusing to eat something that she would normally not have a problem with and expect an answer like, "Well, the last time I ate that food, I saw a h…

More catching up: Christmas Eve & Christmas

The Monday before Christmas, Donny took the 3 older kids to his parents' house to spend the night. It's about an hour away and having them go like that always gives me a bit of anxiety but they love going and it's nice to have a bit of peace & quiet. I still had a lot to do before Christmas since every single day the week before had been so packed with things to do, and some of it was stuff that I couldn't do with all the kids around. We wrapped the presents that Raya had picked out for all the kids and Raya insisted on writing her own name on them. It would have been fine but she was having a bit of an OCD moment and got really upset when it didn't look right to her.
I had planned on taking Raya to see some Christmas lights that evening but she was having a really off day and was really crabby. She said she wanted to watch a movie and THEN go look at Christmas lights but by then it was too late to do both so we just stayed home and she laid on the couch and wa…