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summertime, validation, and other late night ramblings

Summer is in full swing. Especially since nature got the memo that it was June and the weather suddenly got hot. We had our second swim of the summer yesterday. Thankfully this time Raya wasn't connected to her pump. That made it much easier. The good news is that our sunscreen worked. The bad news is that we are all painfully aware of the spots that I missed. In my defense, squirmy impatient kids are difficult to get even coverage on. As for myself, there are just certain directions that my shoulders can't rotate. That accounts for the crimson triangle right between my shoulder blades. The wrist spot is my left upper thigh/HP region, which I did not realize at the time was being exposed to sunlight but now I've learned my lesson. The left side of my neck was just forgetfulness. Fortunately I did a much better job on the kids than I diff on myself. They had a fabulous time swimming. They LOVE going to the pool and now that they're older, I'm not terrified to take them by myself. Still completely paranoid but not terrified.

Raya had her fair share of water inhalations but Ashtyn is the one that sounds yucky today. She already had her annual weather change cough that she gets this time of year but it sounds different today and when I listened to her lungs, one of then sounded a little crackly so we'll see how she is tomorrow. She feels fine, she just sounds gross.

After we swam, we had lunch at our neighbor/friends' house and then the kids were exhausted and ready to lounge around for the afternoon. Raya switched to a different OT for the summer and will be going earlier in three wren instead of on Fridays for a couple months. It's the same therapist we had for a few months last summer & fall and we love her typo, so we're happy to be seeing her again. Raya is moving on to a different therapy protocol to help integrate another promotive reflex that should have disappeared by now. If I ever get around to reading up on it, I'll explain it. :) I had hoped that after a couple hours of swimming and then OT, she'd be so tired that I could get a late afternoon nap out of her. Plus she had a near blowout on the way to therapy so I figured she'd fall asleep on the way home. It didn't happen. She was crabby as heck though. (except when I let her eat grapes) All of them were. I was ready for bedtime last night.

Speaking of eating... Last night I emailed her doctor to give her an update about how Raya has done with the med changes and adding corn. I explained my observations with Raya still having solids in her stomach even after liquids have passed through, and ended with, ”How long SHOULD it take for 4-5 tortilla chips to leave her stomach?” The reply I got today was sad but validating. My suspicions were right, 6 hours is a wee bit excessive. She said it should be gone in about 2. No idea what we'll do, but it made me feel a bit better to have her confirm what I'm thinking. Sucky as it may be that her stomach isn't doing what it's supposed to be doing. One thing I'm extremely grateful for is that she is not feeling miserable like so many kids with dysmotility. I'm thankful that the liquids move through and that her intestines are able to absorb enough nutrients for her to grow. It could be so much worse. Sometimes I have to remind myself of that so that I don't get so frustrated about feeling totally stagnant.

I keep saying that I don't know what will happen with her in the next few months and there are a couple reasons I keep saying it. It eats at me. I want change but I don't know if change is worth giving up familiarity. I keep mentioning it because I don't know IF anything will happen AT ALL in the next few months. I have no idea. That alone is frustrating. Even IF anything happens, I have no idea what it will be. She could have surgery, she could be sent out of state for more testing, or she could just keep doing the same things we've been doing and spend more time waiting to see if things improve on their own. Any of those could be agonizing in their own special ways. I get so impatient. It's funny that one of the things people say to me all the time is how patient I must be. That couldn't be farther from the truth. Ok, I admit there are certain ways in which I have become exponentially more patient in the past 3 years, but when it comes to waiting to see if things get better on their own, or waiting to hear back from doctors on what to try next, my patience goes out the window fast. I feel like the medical world moves in slow motion. We are not a critical case. She could go on for a very long time just living on Neocate through the tube to bypass the difficulty her stomach has with food. The question is, where do we draw the line? At what point do we say that she's as good as she's going to get, accept her GI tract for what it is, and move on? I don't think we're there yet. I know there are more things we haven't tried yet. On the other hand, how invasive do we get with her? The treatment options we do have carry risks, and some of them are pretty big. What if the benefits outweigh the risks? It's a complex issue that makes me crazy when I allow my mind to go there. I know what I want for her, and I know I can't give it to her by myself. Ack, there I go again with the speculating, wandering mind.

I realized something tonight. I already knew that most of the time, I completely love snuggling with Raya at night. On nights like tonight when she was yelling at me for the last hour that she was awake, I was happy to see her sleeping soundly on the living room floor after the other kids went to bed. I laid on the couch waiting for the inevitable 11:40pm wake up, for which she was about 7 minutes late, and I could hardly stand just looking at her when all I wanted to do was snuggle her. (this is the realization part) All day long, she is a ball of endless energy. She has a feisty personality that she has developed out of necessity, and she throws that feistiness at me all day long. At night, she's different. When sleep overpowers her, she is relaxed. (except for that one hand that's usually in a fist while she's asleep) Her defenses come down and she wants me close to her. She wants me and only me. How could I not love that? I feel guilty quite often about the lack of balance in the time I put into the other relationships I have in our little family. Even so, there is a part of my soul that needs this time with her. Not to mention that by sacrificing sleep in my own bed, I'm making it possible for everyone else to sleep peacefully because she's happy & quiet on the couch with me. :) *sigh* I hope that I won't ever regret this little nightly ritual we've fallen into. Someday get internal clock (and her GI tract) will stop waking her up every night somewhere between 10 and midnight and we won't snuggle at night anymore.


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
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Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …