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Miss Raya is going to be a busy girl this month. Or rather, she's going to make her mother a busy girl this month. Usually I like to turn the page on the calendar in our kitchen but yesterday when I changed it to November, I just wanted to flip it back to October.

To kick things off, we will be having the first of many IEP meetings on Monday. I've talked to some helpful people (and a couple who only made my anxiety worse) so overall I'm feeling more prepared going into the meeting than I did a few days ago. It's still just one of those experiences where you won't know what to expect until you get there but I'm trying to prepare whatever I can ahead of time. My biggest concerns are how the school is going to deal with things related to her G tube and food allergies. I want them to be trained well on emergency procedures and I want them to take her medical issues seriously. I had hoped to get an emergency G tube protocol from the GI clinic but when I talked to the nurse, she told me to just call her after the meeting and let her know what the school wants from the doctor. That wasn't what I wanted to hear but oh well. I know that Raya will love preschool and this week has confirmed for me once again (much to my dismay) that it's going to take a larger village to help us raise that child than it takes with the others. The hard part for me is sending her out of my house where complete strangers will be responsible for overseeing her safety (remember, girlfriend has no sense of danger?) and her G tube.

Well, more about the IEP will follow. :) The next item on the list is her birthday, which is coming up way too fast. It blows my mind that she will be turning 3. In some ways it feels like she's been here forever but at the same time, 3 years has gone by so fast. I guess that's what happens when you're so busy.

I was finally able to get in touch with her GI doctor. She called me last night after hours, which is one of the things I have always loved and appreciated about her. Before I met her, I had no idea that doctors did that. The day of Raya's first hospital admission, I had taken her in for a weight check that day and she had lost weight. I was expecting someone to say or do something right then while we were in the office because she had told me at our appointment a few days before that if Raya didn't gain weight over the weekend, she was going to admit her. When they were done weighing her and we left, I figured it must not have been a big enough deal to worry about. Then the doctor called me at 8:30 that night and told me to take her to the hospital and she'd follow up with us in the morning. For the next several months, she called me often because of all the problems Raya was having.

Anyway, she called last night and we were able to go over everything that's been going on in the last month. I gave her details about the food allergies, slow motility, increased sensory issues, increased reflux symptoms, occasional spitting up, and her upcoming surgery. We discussed possible causes for the sudden change in motility and talked about going back to a GJ tube. I'd REEEEEEEEALLY rather not do that if we don't absolutely have to. I don't think we're to that point yet but at least we know it's an option. Another option she brought up was putting her back on one of the meds she used to be on. I cringed when she said the name of it and told her that I don't want to do that either & would rather do the GJ. I will cry if she has to go back on it. It was the one that had to be compounded every 2 weeks and we only got about a teaspoon of it at a time. It was obnoxious and she was a little pill when she was on it.

We decided that Raya should have another EGD (endoscopy) to take tissue biopsies and look for anything that could be the source of the intermittent gastric bleeding she's had for the past few months. Rather than subject her to multiple anesthesias close together, we're going to try and collaborate with the surgeon and do both procedures at the main hospital instead of the outpatient surgery center. Right now the surgery is scheduled for the Monday of Thanksgiving week but we're trying to move it to Tuesday instead. Should make for a fun Thanksgiving. I still have mixed feelings about the surgery but after having one bad/scary G tube pull-out emergency, we really feel like removing the scar tissue is in her best interest. Hopefully the recovery won't be too bad, especially considering that she'll be starting school sometime in the near future. And I'm in school with no breaks until the classes end in February. So yeah, we need her to heal fast.

And last but not least, I've finally gotten her a referral to the developmental pediatrician. Once I fill out the 17 pages of background information they sent me, we'll be able to schedule her appointment and most likely it will be sometime in early 2013 unless we're lucky enough to get in on a cancellation before then. Eventually I'm hoping that the geneticist's scheduler will return my phone calls so we can get that appointment on the schedule too. I'm going to try and get her in to the orthotist to work on getting her a SPIO but I don't know when that will happen. She'll have her annual neurology appointment in early December and I think there's a GI follow up in there somewhere. Oh, and there will be a surgery follow up sometime after the surgery too. So yeah, the next couple of months will be even more insanely busy than November & December usually are but I think there will be some good things to come out of all of it.


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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. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

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 …