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So far behind that I can't catch up

If I try to actually write about everything that's happened since I last posted almost a month ago, I will never catch up so here's a month's worth of pictures.


10-29: went to the doctor for another cellulitis infection on her other arm (the last one was in July)
As is usually the case, it was worse than the picture made it look and got her another 10 days on antibiotics. Thankfully, since we've had her on a good probiotic (one with 10 strains of bacteria, not just 1 strain like Culturelle & Florastor) the side effects were not nearly what they have been for her before and it didn't impact her gut and her motility like it has before. HUGE blessing!!
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.
11-6: We FINALLY got around to planting our fall/winter garden. I know, it sounds like an oxymoron, right? We can do that sort of thing here though, thanks to our lovely winter weather. While my family up north was getting dumped on with early snowstorms this month, we were basking in the glory of Arizona in November, which is by far one of the most wonderful months here. Raya had a really great time helping me plant the garden. It's a good exercise in tolerating textures, getting hands dirty, and talking about all of the vegetables we were planting and how delicious they are, and whether or not she can eat them. She was absolutely delightful the whole time and I really, truly enjoyed spending that time with her.

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.

11-8: Raya came to the grocery store with me, which is something she rarely does. I usually go while she's at school or at home with her respite provider. Taking a child who has a very abnormal relationship with food to the grocery store is quite the experience. In the car, I had asked her to remind me to buy onions because I hadn't written it on my list. It also gave her a task so she felt like she was being my helper. When we walked into the produce section though, she had no idea what onions looked like. She walked up to the corn and said, "Mommy, is that onions?" Then she couldn't understand why I didn't want to buy any of the cruddy looking corn for 58 cents an ear. "But Mommy, I LIKE corn!"

11-10: I don't know how it happened, but my sweet girl turned 5 years old. It has been so different than I ever envisioned for her when I was holding my little newborn Raya for the first time, but it has been amazing. She fills our home with a unique energy (a LOT of it) and so much of our world revolves around her. She made me a mom of 4 and she made me the mom of a child with unique special needs, and that has changed my whole world. I love her more than words could ever say!


On her birthday, I went to school and brought chocolate chip cookies to her class at her request. My sister found me an allergy-friendly recipe so I made Raya some cookies for her birthday and bought cookies for the rest of her class at the store. Ashtyn did a presentation for her science class about feeding tubes and digestion since they had just finished studying the digestive system, so after I finished up at her school helping her with that, I went to Raya's class. They ate their cookies outside at recess and then got to jump in a nice, big pile of fall leaves. One of the special education teachers had driven a couple hours away over the weekend and brought back 7 trash bags full of leaves so that the kids could jump in them. It was such a sweet thing of her to do just so that these kids could experience jumping in real fall leaves. :) I love this picture so much! I think it is just the embodiment of her personality and I love the expression of joy on her face.


One of her birthday presents (ha ha) was that I let her go to school without her backpack on. She was so excited that I let her be unplugged at school. My real motivation (aside from knowing how happy it makes her to play without it on) was that I wanted her to be hungry enough to eat at least part of her birthday cookie. She LOVED handing out the cookies to her friends and she loved sitting next to her friends and holding her special cookie, but she didn't have any desire to eat it. I convinced her to take one tiny nibble before she went to play. Mostly though, she was just happy to sit and hold it. One of these years, she will devour her birthday treat. I hope.


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!

11-7: I'm going all out of order here but I had to put this picture in. There are no words to express how much I love feeding this baby. (now that she doesn't choke on her bottles so much anymore :) ) She eats anything I feed her and she LOVES food. As much as Raya hated when we tried to feed her, that's how much Piper loves being fed. I have been making baby food for her and every single part of feeding her is just pure joy for me. I didn't realize just how much I missed having a baby with typical appetite and oral development until this girl came along.
Broken pump bags. So stinking many broken pump bags this month. We have had at least 7 in the past 2 1/2 weeks. It's been completely ridiculous, not to mention messy, inconvenient, and wasteful. I've been in communication with our home health provider and they replaced some of the bags for us. Next item on the to-do list (after I figure out our health insurance open enrollment stuff for next year) is to call the manufacturer and let them know. It's been really ridiculous though. There was one day last week where I tried to have Raya wear big girl underoos all day long and between the pee accidents and the broken pump bags, I did one load of laundry that day that was entirely Raya's.
10-11: I had no idea that the kids didn't have school that day until a couple days before Veterans' Day. Oops. We had a really full schedule between 2 therapies and a GI appointment, so it was a bad day to not have school. I took Cole with me in order to keep the kids from fighting while I was gone. He likes going to OT and Raya liked having him there. They raced on the scooter boards and played Don't Break the Ice to practice fine motor skills and motor planning. It was a good therapy session.
Ashtyn has been taking full advantage of the beautiful weather by laying out on her quilt and reading every afternoon. She loves to read!
We had a GI appointment on 10-11. It was not our most productive appointment. Raya has finally broken the 37 pound mark, which is exciting. The amount of weight she had gained in the past 3 months was not impressive, but it was a gain which means it wasn't a loss, and I'm good with that. Especially with all of the GJ tube drama that we had going on. It's amazing that she gained anything at all. I know she had to have lost a decent amount of weight during the last week of September and the first couple weeks of October, so I'm happy she's gained since her last appt. Other than that, there really wasn't anything to talk about. If we had gone to do the out-of-state testing like we had planned to the week before, we would have discussed those results, but we hadn't so there wasn't much to talk about. The doctor was rather sleepy that day and I didn't think she was going to remember much of what I told her anyway. Her head was actually bobbing while she was taking notes and she asked me the same question 3 times during the appointment and then came to the waiting room afterward to ask me that question again. She needed a nap. :) She ordered some routine labs, which Raya was NOT happy about. The last couple times she's had lab work done, the phlebotomists have gotten a good vein on the first stick. After all of the hundreds of times that it's taken multiple sticks and IV team to get labs or IVs started on her, it is a HUGE relief to have labs only take one stick. I really hope it's a continuing trend!
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.

11-13: Hives. I hate hives. I don't know what caused her to break out in hives but given that she has had dairy intolerance issues and I had broken my dairy-free diet the night before by eating pizza, I was afraid that it may have been an allergic reaction. Hopefully not. Her pediatrician thinks it was a random occurrence and while I'm not totally convinced, I hope he's right.
That evening, Raya's school did a fun literacy night activity. They had stations set up at each of the classroom areas where people would read books and the kids could do crafts. I brought the 3 older girls and they loved it! They had all picked out coordinating outfits, which were hilarious but cute, and we had a really good time.

11-14: My darling baby turned 9 months old. I have to not let myself think about how fast time is flying by because it breaks my heart, but I have loved every bit of her for the last 9 months. My current favorite thing in the whole wide world is that when you hold up a corner of her blanket and say, "Here's your corner!" her whole face lights up and she grabs the corner, sticks it in her mouth, then puts her right hand in her mouth, and finally gets her thumb in her mouth and clings to the corner of the blanket while she sucks her thumb. I know, it's one of those things that only a mother can love, but I adore her and her little thumb sucking blanket addiction. She had her 9 month check-up that day and weighed in at 16 lbs 9 oz, which makes her our second smallest 9 month old. Raya was the second biggest, thanks to 7 months of tube feeding.
The girls have caught colds again, and now Donny and all the older kids have varying degrees of stuffy noses and occasional coughing fits. Somehow, we are going to have to get everybody healthy and KEEP them healthy so that we don't have to reschedule Raya's testing again. If she ends up sick again in December when we're supposed to go do the testing, we might just call the whole thing off. To be honest, I'm still on the fence about how beneficial it's even going to be, but that could just be my learned coping behavior of having low expectations of any and all medical testing in giving us helpful results. *sigh*

The weather has been cooler this past week but it has still been warm and comfortable, so the kids have enjoyed playing outside in the afternoons. I think this picture was taken on Wednesday when she didn't feel well so she didn't go to school, hence the clothes that don't match.

Raya's oral intake has been next to nothing for the past 3-4 months. Part of it is because of how her stomach feels, but I think there is also an aspect of habit to it. She has gotten out of the habit of eating. I am trying to get her back into the habit of eating lunch, and yesterday I got her to eat about 1 teaspoon of whole black beans and the equivalent of 1 tortilla chip. We were both pretty excited. At 12:30, I told her that if she ate all of her food, I would let her stay unplugged from the pump until 1:00. She decided that maybe eating 1 bean wasn't enough and maybe she could actually eat all of what I had given her, so within about 20 minutes, she had finished the 1 teaspoon of beans and 1 tortilla chip. Small victory but still a victory!

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!



Comments

  1. Happy(late) birthday to Raya! Looks like you had a really busy month.Also I am sorry for your loss :(

    ReplyDelete

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