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Friday, January 30, 2015

A bit of January

Since I haven't done much updating this month, I thought I'd throw it all in one post.

Little Bit started figuring out how to knee crawl just before her 11 month birthday. 2 weeks later, she still mostly army crawls but she's starting to knee crawl too.
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She also discovered that she loves the ball pit at therapy. Given that it took us somewhere between 18 months and 2 YEARS to get Raya in it without having a cow, I didn't expect her to like it but she did. I laid her on top of the surface and she just laid there, completely still. She slowly sank down into the ball pit and had a great time grabbing each ball that rolled into her face and flinging it. She also enjoyed kicking her feet. Even when her face and body were completely covered, she was still happy and didn't get scared or cry. That's the kind of experience that reaffirms for me that Raya has just been wired differently since before she was even born.
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We were able to get Raya fitted for a new medical stroller that will be similar to this one, only pink:
1-13-15

We have GOT to start putting baby toys in the diaper bag so that Piper doesn't have to keep playing with feeding tube supplies to keep her occupied during church. Although she probably prefers the feeding tube supplies anyway.

We just changed to the 8:00 time slot and let me tell you, getting 5 kids and 2 adults out the door for 8am church has been a beast. I think the closest to on time that we've been is 8:15 and I was pretty proud of us that day. I haven't found my rhythm yet with getting all of Raya's morning meds & formula bolus prepped before church, pumping a bottle for Piper, getting myself and 2 little girls dressed and doing several people's hair. Oh, and breakfast for me has not happened yet. Clif bars and Odwalla bars have kept me alive for the past year or so. Last week, we were in our seats at 8:30 and then had to give Raya her meds. Normally I take her to the nursing mothers' room so we don't make a spectacle of ourselves but since we had JUST gotten there, I figured what the heck, we'll just do it right here.


We had a run-in with influenza A last week and I was reminded last how much I dislike going to the pediatrician's office and why we avoid it like the plague. If we had hazmat suits, I would make all of us wear them when we go there.
It's silly to have a "sick room" when you have to walk through the regular waiting room in order to get to the sick room, and when people keep their sick, hacking, phlegmmy little kids in the regular waiting room. People looked at me like I was some kind of monster for sending my sick child in the sick room alone but I wasn't about to go in there myself, or take my 2 healthy kids in there to wait. I was worried that it would ravage through all 7 of us but Tamiflu and our awesome quarantining skills kept it isolated to 1 of the 7. Not gonna lie, I'm pretty proud of that. (knock on wood...stay healthy, kids...) Thankfully, the child that got sick was not one that has had any chronic respiratory issues and the Tamiflu and other stuff we used really did make a difference and turn things around quickly. Thank God for modern medicine.


We got the game "Scattergories" for Christmas and the kids LOVE it. We've had so much fun playing it with them. Raya is too young to play but she likes to sit at the table with us and write on a Scattergories paper just like the big kids. Since we always play after dinner, she usually falls asleep while we're playing. I just love sleeping children. Few things are as beautiful as a sleeping child. The past month has been a struggle for her (and us) in a different way than we've had before, so having her calm, quiet, and peacefully sleeping is a beautiful thing for all of us.

We've had a bit of a problem with a certain little redhead stealing her baby sister's special blankies. She has plenty of special blankets of her own, but Piper's blankets are "super soft and cozy" and she really REALLY wants them. The solution we came up with was for Raya to do jobs to earn money so she can go to the store and buy her own blanket like Piper's. It's definitely more work for me to supervise her with all these jobs but hopefully she is learning something. Her first one was to scrub a frying pan that the big kids had forgotten to wash when they did the dishes. She needed a lot of coaching but she did a great job!
She also helped me pull weeds in the garden. There were more weeds than vegetables and it was a big job that we didn't finish before all the rain started, so there will be more next time we go out, I'm sure.

Last week, we went to a friend's house after school and they just got a soft, fluffy kitty for Christmas. My child who thinks she is a kitty was beside herself and could not get enough of him! She told me on the way to school this morning that she wishes she had a magic wand so she could make herself a real kitty.
The other little girls were pretty enamored with him too.

Speaking of thinking she's a kitty...  Sometimes I walk into the kitchen and find things like this:

In other news, we have had some good meals lately where she eats enough calories that I should probably be counting them and deducting formula. I made beef stew for dinner one night this week and she ate about 1/4 cup of it. I absolutely LOVE when I am able to make something for dinner that she can eat along with us. It's not an easy task with the things she is allergic to but I'm working on it.

After some discussion about everything we learned from the motility testing last month and what we know about Raya after working with her for 5 years, her feeding therapist and I decided that now is a good time to start pushing her again. We are pushing her on the variety of things she is eating and pushing a little more on the quantity, although we are still sensitive to how she is feeling when she eats. This week, I brought a diced peach fruit cup for her to eat. She wanted a baked potato like always, but I really want to get her out of the baked potato rut so she doesn't end up developing a reaction to them. She likes peaches and she has eaten them before but I knew it would be a challenge for her. I opened the cup and drank half of the juice out of it so it would be easier for her to get peaches out without spilling.

I was right about it being a challenge for her. By the time we finished the session, she had eaten about half of the fruit cup, which was great, but it was really hard for her. She gagged a few times and if she saw any juice on the spoon with the peaches, she really struggled to make herself eat that spoonful. She did a great job though and we were both very proud of her. It's funny, the way I feel when I watch her have a good day at feeding therapy is the same way I feel when I watch one of the big kids nail their forms in a karate tournament. She has to work SO hard to make herself want to eat. On the way out of the clinic she was excited about the Rudolph stamp on her hand and was chattering on about how she worked really hard so she could make Miss Heidi proud of her and make me proud of her. It melted my heart a little but also made me think about the importance of teaching her that making other people proud is nice but that she needs to eat for nourishment, not to make other people happy.

 Moving on...
Yesterday we had our first accidental tube pull-out since probably October or November. Raya thought it was pretty funny, but she thinks everything is funny lately. She was messing around, probably pretending to be a puppy or a cat, and pulled the whole thing out of her stomach. Thankfully it was in between a bolus and her continuous feed so she didn't leak stomach everywhere this time.

 And then we have this sweet girl, whose skin is giving her troubles. Sad panda.
 We're not totally sure what's going on with her but we think it's food-related so we're doing what we need to do to figure it out. Everyone who has seen it has generously offered me theories about what it is and what will cure it. haha. Thankfully, it has gotten MUCH better since I took those pictures on Sunday and Wednesday.


I had a friend tell me recently that she had seen something I posted on facebook about how well Piper was doing with eating solid food, and it had made her jealous/sad/angry. She has one child with eosinophilic esophagitis and a baby that is suspected to have it as well, and they have struggled with food with their baby. She didn't mean that she was jealous/angry at me, but just frustrated that they were going through much of what they'd gone through with their other child all over again and she wished she could say the same things I was saying about how great things were going. I totally get that. I remember feeling the same way while I sat in church watching my friends feed their kids Cheerios and crackers to keep them happy & quiet and not have to clean up vomit.

The truth is, I do have some concerns about Piper and she does have some issues, I just haven't been vocal about them like I have with Raya's because they're not to the degree that Raya's have always been. With Raya, it was clear and obvious that she had something very wrong and needed intervention. And truth be told, I've gotten enough unsolicited opinions in the last 5 years to last me a lifetime and I really don't need it this time around. With Piper, everything that has come up has been met with, "We'll keep an eye on that and see what happens." So that's what we're doing. I've been taking advice from sources that I am comfortable with and I think we've managed pretty well. Suffice it to say that my mind does not work the same way now that it did before Raya was born and that is both a blessing and a curse!

2 comments:

  1. I am glad to hear Raya is doing better with food :)
    Is it okay to ask why Raya needs a stroller ?(I am NOT questioning that she needs one, I am NOT being judgemental in any way,shape or form)
    If it's too intrusive I apologize, the last thing I want is to upset you with my questions.

    ReplyDelete
    Replies
    1. No worries, I don't mind answering that question. To put it briefly, she fatigues quickly, gets tired from carrying her backpack, overheats easily (especially in the Arizona heat), has a chronic pain condition, and has days where she just plain doesn't feel well. This makes it possible to leave the house and not end up having to carry her when she gets too tired to walk.

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