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Showing posts from July, 2014

Summer break is winding down

Yes, really, the kids go back to school on Monday. The first Monday in August. It's early compared to the rest of the country but we're ready. It's too hot to do all the fun outdoor things that people who live in cooler climates get to do, so the kids might as well go back to school while it's still hot (112 degrees today) and have a few breaks during the school year when the weather is nicer.

It's been a nice summer. We haven't done anything big and exciting (except for the big kids going to the karate tournament in Vegas with Daddy) but we have stayed busy and had about as much fun as I've had the energy for. We're trying to pack in a few more fun things this week before summer break is officially over.

Yesterday was the last time I'll have to take any of the older kids to therapy with us. (thank goodness. bless their hearts.) Taking extra kids to therapy is not always pleasant but sometimes we just have to do it. Kaida used to have no choice but…

Cellulitis, bile vomit, and other happenings

I have realized this weekend that I use a lot of energy focusing on not letting myself get sad/upset/disappointed/worried/discouraged by things. There's nothing wrong with that, it's just an observation. Better to spend energy NOT letting myself get sad/upset/disappointed/worried/discouraged then to waste energy doing any or all of those things, right??

So we had a pretty good weekend overall but there are some crappy things going on for Raya too. We'll start with the good. First, while the big kids and Daddy were gone to karate Friday evening, we got to enjoy a wicked thunderstorm. It was so close that we could feel the thunder and it rattled the house. It was fabulous. I love thunder!! It rained pretty hard & fast too, as is typical with an AZ monsoon storm. The power went out too, so since it had cooled off a lot outside (from about 116 in the late afternoon/early evening to about 85), we opened up the doors so we could enjoy the storm. She then announced that she r…

Why my healthy baby sometimes makes me sad

Being a parent comes with a lot of unexpected twists and turns. Truth be told, I don't think there is any possible way to anticipate what it is going to be like to be a parent, no matter how many kids you already have or how much experience you have working with kids. There is no way to know how you will handle situations that arise or how you will feel when certain things happen because you have no idea what your child's life will be like. No matter how much you think you know about raising children, you have no idea what it's like to raise any one particular child until you're doing it. My experiences with each of my children have been similar in many ways, but also vastly different because of their different personalities, temperaments, preferences, and health. I didn't know what it was like to be able to give a baby table food until kid #2 came along, because kid #1 didn't get her first tooth until she was 14 months old. I assumed all kids would be terribl…

Slowly moving forward

We are coming up on 2 weeks of Raya having her GJ tube, and she is definitely making progress in some areas. First and foremost, she is back to her normal sleep schedule, meaning she is responding appropriately to her sleep meds again. HUGE sigh of relief there. I am happy/comfortable with the med we've been using and really didn't want to make any changes there, so I'm relieved that we don't have to now.

She is making some progress with her GI issues too. She seems to be more comfortable overall. It's kind of hard to explain how I know that, but I'll try. Raya does not express pain or discomfort verbally most of the time. It is rare for her to do that unless she's really feeling awful and I ask her several times and rephrase the question multiple ways. During the day, if she isn't feeling well, she gets more and more alert and hyperactive. Her highs are really high and she has a lot of ups & downs in her activity level and mood. She is unable to h…

Who needs sleep anyway??

Apparently not Raya. At least her brain doesn't seem to think so. It hasn't for about 2 1/2 years now. This will be one of those posts that's a little uncomfortable for me to share, but I feel like it's an opportunity to help people understand what it's like to have a child who has significant sleep difficulties. We're not just talking about a kid that fights bedtime. All kids at some point protest having to go to bed, and yes, that is difficult to deal with too. This is not at all what we're dealing with though, so hopefully this post will help explain the difference.

I don't remember exactly when Raya's sleep problems started. She had started sleeping through the night pretty early on. In the beginning, we actually had to wake her up every couple of hours overnight to try (usually not very successfully) to get her to eat. One of the best parts of having the NG tube was that I could just let her sleep and feed her through the tube instead of waking…

Advocating for my child

I mentioned a couple weeks ago that, for many reasons, we had decided to switch Raya's G tube out for a GJ tube. We had come up with a good plan and I felt good about Raya having a GJ tube again. Then after I hung up the phone from talking to the radiology scheduler, a wave of anxiety washed over me as I thought about the actual process of placing the tube. Even though I knew that trying the GJ was what we needed to do, I was completely overwhelmed by dread and anxiety just thinking about putting Raya through that process.

Rewind with me for a moment, back to September 2010. Our first experience with getting a GJ tube (or rather TRYING to get a GJ tube) happened when Raya was 9 1/2 months old. She'd gotten her Bard button about 5 weeks earlier, and had started vomiting brown blood, meaning that she had a slow, chronic bleed somewhere in her stomach. Her GI decided to do a scope and found that a large lump of tissue had formed adjacent to the bumper that held the tube in her s…

A lovely 4th of July

In the history of Independence Days in the nearly 13 years that I've lived in Arizona, this one was definitely one of the most pleasant. The weather was AMAZING. The day started out with a bang when the kids went outside at 6:00 and found out the hard way that we have an ant problem in the back yard. I was rudely awakened (as was half the neighborhood) by the sound of Raya screaming as if she was being chased by an axe murderer. I ran outside to see what was going on and she was laying on the ground with her tipped over tricycle and the big kids were slapping her legs & feet as she screamed, "THERE'S ANTS ON ME!!" I was honestly surprised that nobody showed up outside with the way she was screaming. She got a few bites and a renewed fear of ants, but she's fine. I hadn't realized how many ant bites she had until I was cleaning her up a little while ago. She got about 20 bites. Good thing she's not allergic!

After that, we were all very much awake and …