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Our busy month of May

I started a blog post about our girls' night at the end of April while the boys were camping but then my life got ridiculously busy and my computer started its steady decline until it became pretty much completely useless, so I didn't have access to the pictures from our fun night. I will finish that one soon though. The last month or so has been just downright exhausting. Between the lack of sleep and all the craziness of the end of the school year, I've been doing what I had to do to get by and not much more. Here is a brief summary of the last month:

This is what you get when you ask a 4 year old how she wants her hair done for school.
This is how the conversation went:
Me: How do you want your hair today?
R: I want a ponytail and a braid.
Me: Um, okay, so you want me to do a ponytail and then braid it?
*puts hair in ponytail*
R: No, I want a ponytail and a braid.
Me: Okay, it's in a ponytail. Do you want me to braid it now?
R: NO, I want a ponytail AND a braid! *pout pout pout*
Me: How am I supposed to do that?
R: I want a ponytail and a braid NEXT TO EACH OTHER. *still pouting*
Me: Sooooo you want part of the ponytail in a ponytail and part of it in a braid?
R: Yes.
Me: Okay, do you want a regular braid or a twisty braid?
R: Twisty braid.
Me: There you go, it's a ponytail and a braid next to each other.
R: *smile* Hee hee, thank you Mommy!
Another bump in the road the last couple months has been that our previous respite provider found a new job and we had to find a new provider. She put in her 2 weeks' notice on a Monday in mid-April but said that she could keep helping us out on Mondays until we got someone else. Unfortunately, she apparently did not mean that she would be coming for the full 2 weeks. She was coming Mondays and Wednesdays, so she came that Monday & Wednesday and the following Monday and I had planned a whole bunch of errands for what was supposed to be her last Wednesday since I didn't know when we'd be able to find someone new. When she was leaving that Monday, she said she'd see us the next Monday. When I asked her what she meant and if she was coming Wednesday, she said, "No, remember I put in my 2 weeks' notice?" Um yes, I remember that but I took it to actually mean 2 FULL weeks. There had been some attendance issues anyway and that was kind of the straw that broke the camel's back for me. Sometimes even though it can be inconvenient, change is a good thing. She's super sweet and Raya loves her and will miss her. They have been great buddies. We were able to find a new provider who is able to do respite and habilitation for us and I think this will be a positive change. I just feel bad for our new provider because she kind of walked into a mess with how off things have been with Raya. Aside from the emotional/behavioral issues, her GI tract is not at its best right now and although I don't think she's in imminent danger of having to do anything crazy, things have definitely declined recently. All things combined, it was kind of out of the frying pan and into the fire for the new provider.
5-2-14, first swim of the season in FREEEEEEEZING cold water!
 5-4-14, "I'm being a kitty, Mommy!"
5-8-14, She fell asleep sitting up

On Friday, May 9th, Raya got to have water day at school. She was SOOOO excited! I volunteered to come in and help so that I could unplug Raya from the pump while they played in the water and then plug her back in after. I think we were all more comfortable that way. They had about 6 different stations so they divided the kids up into groups and rotated them.
the bubble station
It was cold and slimy!
Raya has trouble puckering her lips up to blow bubbles sometimes so she was excited when she got a few.
The next station was some kind of relay race but nobody really knew what was going on so the kids just kind of messed around until it was time to switch. Raya and her little friend cleaned frisbees with sponges. :)
The next station was drawing with sidewalk chalk. I had Raya write her name and then took a picture of her with it but she couldn't look at me because it was bright outside.
After the sidewalk chalk, the kids went to the station with a wading pool full of squirty toys. That one got a little wild. The water was really cold so the kids were a little hesitant to get wet.

The second to last station was a bike washing station. I thought it was genius! They had put one of the big tricycles into a wading pool full of water and sponges and let the kids "wash" the tricycle. It was one of the most popular stations!
The last station for our group was the fishing station. This one was Raya's favorite. She LOVES taking little toys like these fish into the tub with her so she was in heaven with the little fishing net catching all the fishies. The only down side was that there were only 3 nets and there were more than 3 kids.

After they were done, most of them were freezing. It was 9:00 in the morning and unusually cool for this time of year, and almost everything they did was in the shade. When they finished playing, they all got cozy in their towels and had Otter Pops. I think it was the only time this year that Raya got to have exactly the same thing her classmates were having.
I know she doesn't look too excited about it but that's because she wasn't sure how to go about eating a popsicle in a plastic tube. She had a few bites and then handed it to me but she liked what she ate of it. 
We took the kids inside when they were done and helped everybody change out of their wet clothes. They watched Finding Nemo while they waited their turn. It was kind of funny to sit and observe in the classroom. There is a LOT of energy in that room! The kids are so cute though and so funny!

On Saturday, 5-10, we went to Donny's parents' house for Mother's Day dinner. Raya was running around and got a throw pillow caught on the zipper of her feeding pump backpack. Tubie problems. :)

Grandma and most of the grandkids

Loud kisses from Grandpa are a right of passage in this family :)

Mother's Day was pretty good. I have to say that although I have many wonderful reasons to celebrate Mother's Day, it's hard to be in too celebratory of a mood when I think about all the people I know for whom Mother's Day is a reminder of painful trials in their lives, whether it's infertility, loss of a child, or loss of their own mother. It seemed like this year, it was taboo to actually post anything celebrating Mother's Day on social media so I stayed away from the internet for the day. I did manage to get a few pictures with the kiddos but since my new computer is not up and running yet, I don't have access to them right now. I do have a growing collection of pictures like this though:
"Mommy, take a picture of me and Piper!"

Late in the afternoon on Mother's Day, I asked Cole when his end-of-year science project was due. In a calm, nonchalant tone, he said, "It's due the 12th." To which I replied, "Cole, do you realize that TOMORROW is the 12th?" His facial expression was sheer panic. Thankfully we had already been planning the project and knew what we needed, it was just a matter of putting it all together. The assignment was to think of a problem and then come up with an invention to solve the problem. He decided to invent a room-cleaning robot. Being that it was Mother's Day, I turned the project and the boy over to Donny. :) I think this was one of those times when we found ourselves very grateful for random medical supplies that were laying around.
5-11-14, hard at work on the "Job-Bot"
Drumroll please.........
The body is made out of a protein powder jar. The legs are Neocate Jr cans. I had the wheels from one of those little plastic dressers. The arms and head are corn and bean cans and water bottles. They used a formula scoop for one of the hands because the robot is supposed to be able to pick things up off of the floor in his messy room. For the other hand, we used a piece of a Kangaroo Y-site adaptor like we sometimes use to give Raya meds with when we're using a straight port extension tube instead of a Y port. That hand is supposed to be a vacuum. The eyes are a washers with little black plastic buttons, the hat is the scoop from the protein powder, and the mouth is a picture hanging bracket. On the back, we glued a little mesh bag that the robot can put dirty laundry in. We also left the tops of the cans open so that the robot can put garbage or things that need to be put away in other places into the cans.
We thought it turned out great and it was a fun project, even if it was inadvertently left until the last minute. :)

Raya has started asking to hold Piper again and asks me frequently to take her picture holding her. Sometimes I feel kind of bad for Piper because Raya is an in-your-face kind of girl and she LOVES her baby sister. It used to be that Raya would hold her for a few seconds and then be done but now it's the other way around and Piper is the one that only lasts a few seconds.

Raya's new favorite skill is closing one eye at a time. It cracks me up every time! One afternoon she walked up to me with her face all scrunched to one side and said, "Look, Mommy! I can close one eye! Take my picture."

She had kind of a rough morning that morning but had a pretty good day at therapy and by the afternoon, she was pretty happy. I was exhausted so that was one of the few days that I gave myself permission to lay on the couch and attempt to take a small nap. I let her play with my Legos and she informed me that all her guys were racing.
5-13-14, and no, she didn't build any of the little cars, she just stuck them together with the long pieces :)

I have wanted to do another trial run with quinoa to see if her body can tolerate it but every time I've decided we were going to do it, something happens and we can't. I decided to just go ahead and do it last week though, so we threw some quinoa in the Magic Bullet and ground it into flour to make quinoa pancakes with. She enjoyed helping with the project but had very little, if any, interest in eating the pancakes. She just doesn't feel like eating these days and is down to practically nothing by mouth again. Frustrating, but not much we can do about it.
5-15-14, making quinoa into flour

Last Friday, she decided that one skirt wasn't enough when she got home from school so she put on another one. She couldn't understand why I told her that she could not wear 2 skirts and a pair of leggings but it was over 100 degrees!

One of the new favorite things to fight over in our house is who gets to change Piper's diaper. For hygiene reasons, the only one of the kids that I've been letting do it is Ashtyn because she's old enough to be thorough about cleaning her off. Unbeknownst to me, Kaida and Raya changed her diaper one day and it's a good thing I noticed because she only had one cheek in the diaper. :)
Piper is definitely the most popular person in our family these days. I never lay her on the floor like I did with the other kids because I'm afraid she will get mauled. Mostly because she DOES get mauled. I got a tummy time mat from a friend last week and the second I put her on it, all 3 of the girls were right there on top of her. 
She really does not like being on her stomach but I managed to get a picture of her on her stomach and not crying.

I do try to let the kids help with Piper where I feel like they can, so one evening when it was time to get her pajamas on, I let Cole and Kaida do it. She loved the attention from her big brother & sister and they got the job done. :)
Raya's last day of school was on Wednesday. It was bittersweet for me. She LOVES school and I'm afraid she's going to be bored over the summer. There really has never been a time when she has not been very scheduled, between therapies, doctors, and school, so it's an adjustment for her to be home all the time. On the bright side, I'm really looking forward to not having to get up and drive to school. I'm still getting up during the night with Piper, or to pump, or with Raya, or all of the above, so some mornings I just don't want to get up when it's time for school! Anyway, little miss fashionista decided that she really needed to wear a sweater to school that day. She told me that it was because she wanted to surprise her friends & teacher with the Hello Kitty shirt that was under the sweater, which also meant that the sweater had to be buttoned. Since it's Arizona and it was a very comfortable morning and was supposed to be about 90 degrees, I let her wear it to school and took it off before I left her there. I brought her out on the front porch to take her picture and the poor girl just can't handle sunlight, so it looks like she's all sad and sullen but really, she was just squinting.
I was a little bummed that her class didn't do anything to commemorate the end of the year like the classes did last year. It was a normal school day in their classroom. In a way, I think it's easier that way to not get all sad and mushy about it but I don't think it has sunk in for her that the school year is over. I am 99% sure she will have the same teacher next year and that is a HUGE relief for me because it means we don't have to go through the whole process of educating about her feeding tube and food allergies with a new teacher. It's been a good year for her!

Yesterday was the last day of school for the big kids. Traditionally, the kindergarteners do a program on the morning of the last day of school, so I packed up the two little girls and we headed over. We couldn't see Kaida very well from where we were sitting but I could tell that she looked pretty glum. She had come in my office a couple nights earlier just sobbing, and said that she doesn't want school to be over and she just wants to live with her teacher. It was precious and I'm SO grateful for a teacher that has shown her so much love and kindness. The program was cute, as always. They sang their "1st Grade" song to the tune of "Start Spreadin' the News" and then it was over. The teachers took each class to a different part of the room so the parents could sign them out, and when Kaida came out to find me, the poor little thing was just bawling her eyes out. I have never seen a child so heartbroken over the school year ending! We had to go find her teacher so I could sign her out and she clung to her leg while I signed the paper. After that, we had to go to Cole's classroom for the little talent show they were doing so we could watch him do his karate form. He did awesome and if he was going for shock value, he certainly had it. I don't think his classmates have seen that side of him before. :)
When Cole was finished, we started to walk towards the office to sign out. It kind of hit Kaida again that we were leaving for good and she started crying again. Like any nice mother would do, I offered to take her out for fast food to soothe her aching heart. :) We don't do that very often (like, EVER) so it was a good treat. She picked Chick-Fil-A because Raya can eat their fries without getting sick. She is still sad, but she felt better as the day went on.

Aaaaand then the fighting started. Oh my heavens, they bickered all afternoon! Donny worked a late shift and I had promised them pizza and ice cream for dinner so that's what we did. I threatened to make them stay home and eat burritos for dinner but I decided that the fighting was probably at least partly because they were all a bit sad or emotional about school ending, so we did it anyway. I am so cool that I even let them eat ice cream BEFORE the pizza.

Today was pretty bickery too. It felt like a Saturday since they didn't have school and I didn't get much sleep last night at all, so we all had a pretty lousy day. I was late getting Raya's pump going this morning and that set her up for a major meltdown. We had to drop something off at a friend's house 20 minutes away and she literally screamed and yelled the entire way there. About halfway there, I looked in the rear view mirror and noticed that Kaida was sitting in the back seat with her hands over her ears and crying. That totally made me feel like crap too. Sometimes I lose sight of the ways that Raya's issues affect the other kids. It was a long day but hopefully we'll start off next week better and have a fun summer and not strangle each other. Raya has a GI appointment coming up this week and it's one of those times when I'm really looking forward to it because she needs to be seen. Hopefully her doctor can figure out what to do with her because I'm at a loss.


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