|10-29: went to the doctor for another cellulitis infection on her other arm (the last one was in July)|
|10-30: This darling creature woke up with watery eyes, a runny nose, and croup, which earned her 3 days of oral steroids.|
|10-31: Both of these sweet girls woke up feeling like crap on Halloween and just wanted to snuggle. It was rather adorable.|
|And Piper holds her own bottle now. Bittersweet. :)|
|She really didn't feel good for a few days. She didn't sleep well and actually took an impromptu nap one day, which is a good indicator that she REALLY doesn't feel good.|
We were supposed to go out of state for motility testing the first week of November, but we ended up having to reschedule it for several reasons. The two biggest being that she had a cough and would not have been able to have anesthesia while she had an upper respiratory infection with a cough, and because there was a death in the family and we spent the entire day before we would have been leaving town at the funeral services. Combined with all of the stress (and it was a LOT of stress) over the drama with Raya's preschool eligibility status (i.e. the psychologist trying to trick me into consenting re-evaluation now vs in the spring when it actually needs to be done which could have resulted in Raya getting booted out of preschool as of Thanksgiving), I just did not have it in me to do an out-of-state medical trip that week. Thankfully we were able to reschedule it for December. (just what we wanted to do in December, right??) And we were also able to resolve the preschool issue, thanks to a few conversations that gave me the confidence, wording, and justification I needed in order to advocate for Raya.
|11-5: Raya has been helping out with dishes. This was not authorized and I took the picture on my way to fetch her from the countertop.|
|11-8: The kids camped out in the back yard. Thanks to an extension cord, Raya got to join them. She was really excited and said she didn't know there could be 'lectricity out there. Simple pleasures in life are the best.|
Another thing that happened this month that I don't have pictures of was that she learned how to eat Skittles. They are tricky little buggers but after she got one or two of them down (in about 6 bites each), she started to get the hang of it and ended up eating 6 Skittles. I was so proud of her! She almost gagged on the last one and had to drink water to get it to go down her throat, but she didn't puke so that was another win.
Here are a few more from her birthday:
|She requested tacos for her birthday dinner so we made tacos and invited family and a couple of Raya's friends over for dinner and cookies.|
|Blowing out the candle on her chocolate chip cookie plate|
|SO excited about her special cookies! (and they were actually good and didn't taste TOO terribly "special")|
|These 4 adorable and very healthy looking children are all healthy and thriving because of feeding tubes. You'd probably never guess it just by looking at them. I love these kids so much!|
|Irony: 3 tube fed kids and one formerly tube fed kid happily playing with plastic toy food.|
|All dressed and ready for school in her new birthday clothes from Grandma on her 5th birthday! I think this shirt is perfect for Raya! :)|
|The weather was absolutely beautiful on her birthday so after school, we went to the park and played. I know I'm biased but I think these girls are so beautiful!|
|Happy kids playing at the park!|
|Ashtyn has been taking full advantage of the beautiful weather by laying out on her quilt and reading every afternoon. She loves to read!|
One good thing that came of our appointment was that I got to sneak a peek at the lab results from the labs neuro had ordered in September. Those labs prompted a discussion between neuro and genetics, which led to neuro calling me to tell me that genetics wanted to see her at their next available appointment. That happens to be in February, which is crappy, but at least now I know which things were off on the labs so I'm not going to be blindsided by it when we walk into the geneticist's office in February.
Let's see, what else. Oh, I had a dream the other night that the pump was beeping and no matter what I did, I could NOT get it to stop beeping because it had split in half right down the middle. I tried and tried but could not get it to stop beeping. Then of course, I woke up and it really was beeping. Not broken in half though, thank goodness. I don't even remember what it's like to sleep for more than 5 hours in a row. People like to tell me that I'll miss this phase of life, and I know that I will miss my babies when they grow up, but I can't help but think that I won't miss waking up at 1 or 2 or 3 in the morning every single night. I really won't. People who say that to me have kids who sleep through the night by the time they're 5.
Moving on... Raya watched a few episodes of Martha Speaks on Friday afternoon. I later overheard her talking/singing to herself in the kitchen:
"Ashtyn is dignified. Kaida is dignified. Kaida climbing on the counter? UNDIGNIFIED!"
Her little operetta went on and on about Kaida climbing on the counter to get a cup, standing on the counter to get something off the top of the fridge, and so on. It was her passive-aggressive way of tattling on Kaida. The really funny part was when Kaida (whilst standing on the counter) said, "*sigh* Raya, what does dignified and undignified even MEAN?" To which Raya replied, "Dignified means sitting up straight and drinking tea. Undignified means rolling around on your back when you're wearing a sweater." And that is what happens when children learn things from PBS shows about dogs who talk. And speaking of talking, I will leave off with this little gem of a video. Raya wanted to "read" a story to me this evening so she picked a book about Snoopy and his brothers & sister at the Daisy Hill Puppy Farm. (cutest little book!) She was totally making it up as she went along but I was impressed with how smooth her little story was. She sure is a funny kid!