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My girl is growing up ♥

Sometimes I look at pictures of Raya as a baby and I can't believe it's been 4 years already. (just like I can't believe it's been 10 years, 8 years, and 6 years since my other 3 were babies)

Since she's still the baby of the family and has required a whole other level of care than her brother & sisters, sometimes I forget that she is turning into a big kid. (even though she reminds me often) Every now and then, I catch a glimpse of her doing something or hear something that she says and can't believe how grown up she is lately.

On Wednesday I went to pick her up at school and the teacher from the classroom next door saw me and came out of her classroom. She asked me if I had seen the pictures on the bulletin board of the kids playing in the leaves and took me around the corner to show me. She had been in northern AZ and had brought back 9 garbage bags full of leaves for the kids to play in since there aren't really any fall leaves around here. She was so excited to show me the picture of Raya because she said Raya and one other little boy from her class were the first ones to jump in the pile of leaves and she loved how excited Raya was.
Future long jumper, perhaps? :)

She has finally gotten the hang of riding a tricycle. At OT today, she was an endless ball of energy so instead of relaxing the last 5 minutes of her session, she rode the tricycle around. She used to have a lot of trouble with pedaling because one leg would push harder than the other, so she went back & forth a lot. The only part she has trouble with now is pedaling while she's turning. She's still learning how to adjust how hard she pushes on each pedal while the handlebars aren't straight.

Her therapist and I watched her pedaling around and neither of us could help but comment about how big she's getting.

Other times it's the things she says that get me. All of a sudden in the past week, her R sounds are SO clear. She is making so much improvement in her speech articulation lately that sometimes when she and Kaida are in another room talking, I have a hard time telling who is who. My parents are having a harder time distinguishing between them on the phone too. It's pretty exciting to see progress like that.

She is a smart little cookie. We had a little incident with running out of her sleep medicine last week and apparently it made an impression on her. The day I picked up the refill from the pharmacy, she kept asking me all afternoon if it was time for her sleepy medicine yet. I kept telling her no but didn't really think much more of it. Then she kept asking around dinner time every night this week if it was time for it yet. I thought maybe she was just asking because she likes to take it by mouth, so tonight I asked her. I said, "Raya, do you like taking your sleepy medicine because it tastes good or do you like it because it helps you go to sleep?" She said, "Because it helps me go to sleep. I don't like it when I can't go to sleep." Smart little kid. I don't think she likes how out of control she starts to feel when she knows she's tired and wants to go to sleep but her body and mind won't let her. I still think part of the appeal for her is that she likes taking it in her mouth, but I wholeheartedly believe that she is starting to learn what these medicines are and how they make her feel. Another example that has really surprised me lately is that she does not like it when I give her periactin. She has never tasted it before and I would never make her taste it. Just the smell alone is enough to convince me that it would be mean to make her take it by mouth when she has a perfectly good G tube to put it through. That's why I was so surprised the first time she said, "I don't like that medicine!" as I was drawing it into the syringe one day. I thought she was just confusing it with one of the others that she asked to taste one day a few weeks ago that is black licorice flavored (whose brilliant idea was that, making a child's medicine black licorice flavored?!) and that that's why she said she didn't like it. I gave it to her through the tube with her other meds as always, despite the protests. The next day, she told me the same thing, and she has said it every day since then. It's still hard for me to believe that a 4 year old could deduce that a certain medication is responsible for making her feel a certain way that she finds unpleasant, but Periactin has not been very pleasant for any of us and I'm starting to be more and more convinced that she KNOWS it makes her crabby, tired and hungry and does not like feeling that way.

She also does not like having a yucky cold. She's been feeling a lot better today but is still pretty congested. Yesterday I let her veg out all day long and watch a lot of cartoons. She loves watching things on Netflix on the iPad. I think it's because she can control it herself and she's learned her way around the iPad pretty well.

I also do not like it when she has a yucky cold. I have been blown away by how quickly she completely lost interest in food this week. That is hard for me to deal with emotionally because it reminds me that being able to continue to eat while she's sick is just one more obstacle between where we are now and being able to get off of the feeding tube. 

Speaking of feeding tubes, I kind of wished I had one on Wednesday. Then I would have been able to avoid drinking this:
 I had my glucose tolerance test. The drink doesn't taste bad but it burns going down and you'd think it was carbonated but it's not, it just feels that way because it's so sugar-laden. Yuck. Thankfully I passed this time and I won't have to do the 3 hour one like I did when I was pregnant with Raya. :)


  1. I've really enjoyed reading your blog! I have a 4 year old foster child who just had a PEG tube placed last week. Your posts have helped me greatly! Also, congrats on the new little one on the way!


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