Made of Gray

End of July Updates

Holly D Gray6 Comments
The last week in July has been full....very, very full for the Gray family.
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On Monday we went to the eye doctor. As you can tell by the photos Caleigh has now joined the lens wearing crowd. We think she is awfully cute sporting the new look. Biased? Probably. Caleigh's nearsightedness with an astigmatism had stayed the same. She was cooperative during the eye exam making it easier to get an accurate reading. The second opinion doctor, the Retina Foundation and now our eye doc all got the same prescription so I'm pretty confident that it's right for now. We picked up the glasses yesterday and for the whole 5 hours Caleigh actually wore them and she didn't try to pull them off. She is making longer sustained gazes and she isn't crossing her eyes as much with them on. Last night, while in her stander, Caleigh "watched" Dora for the first time. Most of the time Caleigh's TV watching consists of glances and listening. She spent a good amount of time looking at the screen. I'm seeing really exciting things with these glasses. I'm glad we did it.

We decided to get just the lenses and frames this time around. Nothing fancy. The eye doc wants to see us back in 8 weeks for a follow up and to discuss eye muscle surgery again. He's back on the surgery band wagon. If we do decided to have the eye surgery they can get a new prescription while she is under anesthesia so her prescription is likely to change. We will probably get transition lenses with the next script.
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Monday night Caleigh didn't sleep at all. And by "at all" I mean maybe 2 hours. By 4am I gave up and we watched Bugs Bunny. She thought that was funny. The culprit was an irritated, raw g-button. I knew what was going on but asked Caleigh anyways. She told me using her iPad. "I feel sick my tummy hurts." We haven't had g-button issues in almost 2 years so it was a surprise. I cracked down using lots of cortisone cream, Ilex barrier cream and stoma powder. Tuesday I canceled all therapy. Caleigh and I stayed home and vegged. I basically laid around like a zombie trying to recoup. Not getting any sleep just plain sucks.
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By Wednesday Caleigh's g-button felt better. We had a 10 am Nephrology appointment. Our least favorite office because it seems like we are always there for hours. This time was no different. They weren't busy, but by the time we actually saw the doctor we had waited 2 hours. He came in and hadn't even read Caleigh's chart. He asked us a bunch of stupid questions because he didn't read the chart, we corrected him and then he was gone. 2 minutes. That's the time he spent after we waited 2 hours. It's annoying. All is well in kidney, blood pressure land. Caleigh hasn't needed a dose of blood pressure medicine for months now. We don't have to go back for a year. So there's the rainbow glaring through the 2 hour wait.
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On to Thursday. We had a GI appointment. Eric and his dad spent the morning trimming trees in our backyard. Caleigh had OT in the morning as well. I spent the morning running around getting ready. We made it to the appointment with minutes to spare. Caleigh's progress over the last few months has been great. She gained a tiny bit of weight. She's up to 30.4 lbs. She's getting 50ml an hour of Elecare 22 hours a day. Caleigh can be off of her feeds for 2 hours. This leaves time for swimming and shopping without a tube. We're going to go get labs this coming week because Caleigh is tired a lot. So they are going to check for anemia. We are going to hold steady on feeds and keep Caleigh consistent for the next 2 months. Then we will try to cut 2 more hours off her feeding time. All plans, but progress nonetheless.
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Yesterday, Friday, we went to the library to pick out some books. We've got to have books for Caleigh's pre-school stuff and I'm so incredibly tired of reading the same stories over and over. I'm sure all parents can relate! The library was nice but of course the first thing I noticed was all the germs. A kid had just vomited inside a book, story time just ended, there were kids everywhere. We basically gelled our bodies when we left. It was a little crazy. That afternoon we picked up the glasses and went to show them off to daddy at the fire station. We came home and swam and then Caleigh headed to bed.

Hopefully, this next week is more calm. I don't think we have any doctors appointments, so that should help a lot.

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Our niece, Avery, is doing well. She isn't needing the pain meds for her incision anymore. Just Tylenol. She started chemo and radiation this week and yesterday was the first rough day that she had since starting the routine. Her treatment will last for 6-9 months. Her parents are asking for continued prayers.
Ongoing prayer needs:
-Pray for continued tolerance and efficacy of radiation and chemo- she goes daily through next Thursday for radiation, chemo is once per week
-Pray that the spot on her lung is not cancer
-Pray that she does not have LOH (a genetic component)
-Pray for them to keep their wits and stay strong and level
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