We had a busy but good Mother's Day weekend. It started off a little rocky with a big meltdown in the car on therapy and in the waiting room at the clinic, but got better after that. :) I decided that if she's going to have a giant meltdown in a public place, the waiting room of the therapy clinic is probably the best place to do it. As soon as her OT came to get her, she started to calm down and was happy enough to let me hold her while she got her legs massaged & had joint compressions. After that, she was as happy as could be and had a great therapy session. She did great at feeding therapy too.
Her nights have still been a little off. Getting her to go to sleep in her bed is an accomplishment, and getting her to stay there all night is unheard of. Friday night, she fell asleep on the floor in the living room. I was up really late studying for the 400 point, 50 question, timed lab practical I needed to take and since it was quiet in the house and no children were around to come and interrupt me, I decided to take the test then. Of course as soon as I was about 6 questions into it, she woke up and started crying. I thought she would come in the office but it sounded like she got close and then stopped. She cried until I was finished with the test (which I got 100% on, by the way). When I walked out into the hallway, I realized why she hadn't come into the office. She was connected to the feeding pump and the feeding pump was plugged into the outlet to charge, so she had gotten as far as she could and then sat down on the floor and hugged her blanket and cried until I finished my test. I know it's probably mean of me but I thought it was funny. We snuggled on the couch until she fell off sometime during the night.
On a side note, part of what was included on the lab practical & essay assignment this week was GI tract motility. I was going through the physiology CD and this made me laugh out loud:
It says, "Vomiting can serve as a protective reflex that expels harmful substances from the body." HA. It can also happen repeatedly for no apparent reason for the first 18 months of a baby's life! The page showed an animation of how the stomach vomits and then the bottom lines of text showed up. It says "Click the stomach to see the process again." THAT made me laugh out loud too because thanks to Raya, I've seen PLENTY of vomiting!
Saturday morning I had 2 essay questions to write. One of them was about how the stomach protects itself from digesting itself and what happens if the gastric mucosal barrier is compromised. I'm pretty well qualified to write that essay too. I could have included endoscopy pictures to go with it if there was a way to do that. :)
Saturday afternoon, the girls and I went to a birthday party for one of Kaida's friends at a pool in our neighborhood. I had been encouraging Raya to drink Splash for the first half of the day so by the time we got to the pool, she was way behind on her feeds & had to be plugged in while she was swimming. Plus it was hot and I didn't want her to get dehydrated. Since it was really the first hot Saturday, the pool was pretty crowded. That meant that there were plenty of people around to watch me follow my 3 year old around the kiddie pool with an 8 foot "leash" coming out the back of her swimming suit. Goodness only knows what they were thinking. I went back and forth between feeling self conscious because people were staring and laughing on the inside because I must have looked like a crazy person walking in erratic circles around the baby pool and they HAD to be wondering what was up. Except for the one guy who DID ask me if it was a leash.
She had a great time and didn't want to get out of the pool. I, on the other hand, was more than ready. I did not have the patience to be in the pool with rowdy older kids that shouldn't have been in the BABY pool to begin with and kept knocking all the little kids around. And don't get me started on the lack of parental supervision at the pool. Moving on...
Saturday evening, we went out to dinner to celebrate Mother's Day. We were a little nervous about how Raya would do since the last time we went to that restaurant, she got her own bowl of chips & salsa and ate them the whole time we were there, and this time she couldn't have any. She did awesome though. When the server took our drink orders, Raya ordered a cup of ice and munched on ice cubes while we ate our chips & salsa & bean dip.
She had a great time with her "ice soup" and straw too. I asked her if she wanted some Smarties and her eyes lit up and she said, "They have SMARTIES here?!? YAY!" I told her she could have Smarties when the server brought everyone else's dinner. It was a good exercise in patience for her. :)
Aside from getting wiggly and talking nonstop the whole time, she did really well and even explained to us why she didn't want to have any chips & bean dip. Bless her little heart. :)
Sunday was Raya's first official day back to church now that her respite provider is gone and the new one hasn't started yet. Donny had been asked to help in one of the classes and since it was Mother's Day, I wanted to hear the lessons in the adult classes so I just took Raya with me. She wasn't quite feeling like her usual self for some reason so she was pretty relaxed and quiet most of the time. She doesn't have much awareness of when she needs to whisper or not talk so she got a little chatty toward the end. Overall though, she did great and it was nice to have her there. Somehow we managed to not take any pictures of me and the kids on Mother's Day again.
We went to visit Donny's parents after they got home from church. Their dog Wyatt met us at the door and Raya was instantly obsessed with him. He has the sweetest temperament and was so good with her. She thought he was pretty neat. Every time she got close to him, he would lay down on the floor and let her pet him.
She was totally fascinated with his paws and kept trying to touch them. It was fun to watch them play.
We have 2 important appointments this week. This afternoon is our quarterly meeting to go over the services Raya receives. For some reason, I always dread that meeting. It stresses me out. Tomorrow afternoon we will be seeing the GI doctor and hopefully she'll have the results back from Raya's impedance study that was done 2 weeks ago. I'm sure I could probably have called by now about the results but I really didn't want to have them give me a two word synopsis of it over the phone. I want the WHOLE report. I requested the records from her motility testing and I'm hoping to get them soon so I can compare her last impedance study with this one. We have decisions to make and I want as much information as I can get so that we make the best decisions we can for her.
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