First, in case anyone was wondering, my birthday was lovely in spite of the yucky night that followed. Sometime between when I went to sleep and when I got up, Donny left some flowers & delicious chocolate peppermint squares on the table for me. (I ♥ chocolate & mint together. He knows me well.)
Raya went to preschool in the morning and Donny took the day off to
After our nap, the 3 of us headed off to lunch. We got an extra plate for Raya and a whole cup full of ice (the nice soft pellet kind that doesn't break your teeth) and she ate a few bites of fruit and some ice while Donny and I enjoyed our sandwiches.
After that, we stopped off at restaurant #3 to pick up some heavenly BBQ for dinner. When the big kids had their homework done, I helped them make me a no-bake cheesecake for my birthday dessert. They each got to put in an ingredient and then Ashtyn spread the filling in the crust. They all thought it was "awesome" making Mommy's birthday cake.
We ate dinner while the cheesecake chilled in the fridge. Raya ate her food and then insisted on sitting on my lap while I tried to eat mine.
Wednesday morning, Raya went to school and I worked on some Christmas projects that I'm rapidly running out of time to finish. (December ALWAYS goes too fast!) Raya had her 4 year well-check and since it happened to be right when her respite provider usually comes, she tagged along with us. Super fun for her, right? In almost 11 years of being a parent, I can pretty much count on one hand the number of times that I've had another adult with me at doctor appointments. They're always while Donny is at work (or while he was sleeping back when he worked nights) and I'm a little too independent to ever ask anybody to go with me. I really don't mind going by myself but I have to say that it was actually really nice to have another adult with me. Of course it also helps that she is pretty much Raya's favorite non-family member. You can't tell that they like each other at all, can you.
It was a nice change of pace to actually be able to have a conversation with the pediatrician and have someone else keeping Raya out of trouble. Ped appointments are always kind of amusing to me when it comes to Raya because I really don't feel like we ever accomplish much other than me updating the doctor on what's changed since her last well-check. I'm still undecided about whether the next kiddo will be seeing this ped or not.
Raya has not had a great stomach week. It's definitely better than the previous week (meaning no vomiting and back on bolus feeds) but it's still not quite "Raya-normal". She's had some dark colored leakage from her stoma that probably has blood in it but I'm not sure. We've gotten out of the habit of putting gauze or pads around her stoma because she hardly ever leaks anymore and has a lovely stoma now (thanks to scar tissue excision surgery a year ago) but the leakage lately has made her stoma sore. She asked me to put medicine on it so we got out the giant tube of Calmoseptine that we'll probably never be able to use all of and put a tiny dab on the sore skin and covered it with gauze. Interestingly, there was no leakage as long as the gauze was there. We already have extra water in the balloon but maybe we need a little more to keep her stoma from leaking. I'm still not complaining though, aside from our initial stoma problems, she has had a very healthy and happy stoma for most of the time she's had her tube. If this is as bad as it gets, I'll take it!
|(hmmm, confusing picture. for the record, that's my thumb and 4 of her fingers :) )|
Thursday was our day to stay home & catch up on things, or at least to talk about the fact that we didn't have anywhere to go so it was the perfect day to stay home & catch up on things. It never really happens that way. I did make some phone calls about finding a habilitation provider, which apparently is more difficult than I realized it would be, and the older 3 kids had their first performance with the community Christmas choir. That's about all we did on Thursday.
Friday morning started off with Kaida puking. Thankfully, she's my neat & tidy puker that almost never misses. She had a fever and felt yucky so she stayed home from school. Raya went to preschool but I had to cancel both her therapy appointments since I didn't have anybody that could stay with Kaida while I went, and much to Kaida's disappointment, I am not okay with leaving my 6 year old home alone. She would love it if I did. She did start to feel better in the afternoon, as is often the case with little stomach bugs. The girls were watching a Christmas movie & wanted hot chocolate so I made Kaida some. Raya can't have store bought hot chocolate mix because of the ingredients though so I called my super smart sister and asked her how she makes it for my nieces who can't have dairy either. Turns out all you need is some coconut milk, cocoa powder, and honey. Worked like a charm and Raya thought it was great. She drank a whopping tablespoon of it.
I found out some very disappointing, sad, and quite honestly terrifying news on Friday too. Raya's neurologist, whom we love dearly, will not be coming back to work. She's been off quite a bit this year for different reasons and has had a very difficult year, so I'm not surprised to hear that she's not coming back, but I was really hoping she would. I may or may not have burst into tears and cried for half an hour when I found out she was resigning. Pregnancy hormones probably played a part in that but I really am sad that she's leaving. Aside from Raya's GI doctor, her neurologist has done more to make sure that we weren't leaving any stones unturned & that Raya was getting the care that she needed than any other doc we've seen. I'm not going into detail, but suffice it to say we would not be where we are now if it hadn't been for the neurologist. Thankfully we see GI tomorrow so I can hopefully talk with her about who would be a good fit for Raya.
Friday night was a rough night for Raya. She was sound asleep on the floor in the living room and Donny & I were relaxing on the couch watching a movie. All of a sudden completely out of nowhere, Raya stood straight up off the floor and started coughing and gasping, and her eyes were red & watery. She was choking on refluxed stomach contents. Awesome. I shut off her pump and we scrambled to grab something for her to puke on because it really looked like she was going to throw up. I'm honestly shocked that she didn't with the sounds that were coming out of her and the coughing & gagging. I drained what I could out of her stomach because she nodded her head "yes" when I asked her if she needed her stomach emptied. I used a syringe to get food out of her G tube that was blocking it from emptying but then just left a catheter bag connected to her stomach for a while. She wanted Tums and something to get rid of the yucky taste in her mouth. If I had been thinking, I would have had her swallow some Carafate but that didn't occur to me at the moment. I felt bad for her. She was awake for the next 2 hours or so but just laid on the couch looking miserable before she finally went back to sleep.
Saturday morning was pretty rough too. The big kids had a sound check for the Christmas concert at 8:00 in the morning. On a Saturday. When I could have stayed in bed. Unfortunately, Kaida was once again not feeling well. The kids HAD to go to the sound check or else they would not be allowed to sing in the concert that night so I took her anyway but didn't let her get near anybody or touch anything. I gave her a zofran before we left but it didn't really help so she sat on the floor in the hallway with one of Raya's puke bags while the kids practiced in a classroom before heading into the chapel to practice with all the microphones.
Raya didn't have shoes on anymore by then so I was carrying her, kicking & screaming the whole way. When we got to the car, I stuck her in her car seat and she got even more upset because I didn't let her climb in by herself. I didn't care. I wrestled her into the buckles, shut the car door, took some deep cleansing breaths, and drove home with her kicking my seat and screaming the whole time. She calmed down some but there was a bit more of this:
Thankfully the rest of the day went much better. Kaida was feeling a lot better by evening but not quite good enough to sing with the choir so she just watched. Ashtyn & Cole each sang solos and both did a great job. I'm pretty sure I wouldn't have been willing to sing a solo at a community event when I was 8 or 10. Since they were dressed up, I had gotten the other girls dressed up too and we took advantage of the photo op. :)
This week will probably end up being just as busy as the last couple have been. We see GI on Monday, make-up OT session on Tuesday, I have an appointment on Wednesday morning, Raya's class has a Christmas program Wednesday evening, the big kids have church activities Wednesday evening, and Friday we have the usual feeding & OT appointments along with the kids' Christmas stuff at school and get out early. Saturday the 3 older kids are competing in a martial arts tournament that will take up most of the afternoon. I'm tired just thinking about it all. Somewhere in there, I have to finish getting ready for Christmas and pretend that the next 9 weeks until my due date aren't going to just fly by.