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Just keep swimming

I have started this blog post about 4 times now and ended up having to delete it all and start over because I took too long and never finished. Maybe this time will be different! We are on week 2 of summer break and so far, we're doing pretty well. We haven't stayed on a perfect schedule but the kids have done pretty well completing their daily tasks and helping with household chores. Heck, we even had a bathroom cleaning lesson last week. Some of them were less thrilled about that than others but I told them that when they know what's expected of them and they know how to do what's expected of them, it eliminates frustration for all of us.

We've had some weird things going on with Raya, and especially with her sleep patterns. I think she has been awake more at night than I may have realized. She was mad at me for something on Saturday morning and was laying on the floor next to the couch throwing a fit. I was laying on the couch with a sleeping Piper, and I don't give in or pay attention to Raya's fits, so Piper and I just snuggled and ignored her. Next thing I knew, she was quiet. I couldn't see her and didn't want to move and wake Piper up so I took a picture over the arm of the couch and was shocked to see that she had fallen asleep on the floor at 8:30 in the morning. She NEVER takes naps. She woke up crabby but perked up after she took a shower.


Saturday evening, the young women's group from church had a dinner and talent show to fundraise for girls' camp. The kids were really excited to participate in the talent show. They are way braver than I ever was! Ashtyn wanted to sing "Let it Go" and was kind enough to let Kaida and Raya be on stage and sing with her. She completely hogged the microphone but she was super sweet to let them sing with her and she did a great job on the song. They were really cute. They had even picked out coordinating outfits to wear. :) After they sang, Ashtyn and Kaida changed into their karate uniforms so they could do a martial arts demonstration with Cole. Donny had worked out a demonstration for them and I think it surprised the heck out of everybody to hear our mild-mannered kids yell and see them throw each other and take each other down. The kids loved every minute of it too. It's so neat to see how their faces light up when they're doing something that they love and that they know they're good at. I didn't get pictures because I was video taping them. I did, however, snap a picture of Piper in her "little black dress".
She looks super excited to be there, right? She was just sleepy. Her great-grandparents sent her the shirt and I thought it was the perfect occasion for it. :)

This week has been kind of a roller coaster. We started out strong on Monday. I took 2 of the kids to the grocery store with me Monday morning and then when we got back, we left Raya with her respite provider and went to one of the schools in the area that does free lunch for kids all summer long. The kids ate lunch and then we went to the library. That was kind of another adventure since it's always an adventure taking a baby somewhere you haven't taken them yet. Aside from a very near blowout diaper, she did well. The kids were excited to check out some new books and start the library's summer reading program. We left when a very cute little girl that was probably between 18 months and 2 wouldn't stay away from Piper in the stroller. I'm a germophobe and I'm not ashamed to admit it. She was an adorable little girl, I just didn't want her touching my baby. We stopped by the pharmacy to get Raya's medicine on the way home (and I now remember why we don't use that pharmacy anymore) and then headed for home. I made some delicious fajitas for dinner, we watched a couple episodes of Murder, She Wrote and discussed who we thought was the bad guy, and then sent the kids off to bed. It was a great day. Ashtyn even handled another feeding pump emergency while I was making a quick run to the bank in the afternoon. Raya's pump bag broke and started spilling formula everywhere. Ashtyn got her off the carpet ASAP, took her in the kitchen and made her stay in one spot, and poured the rest of the formula into a container. She was cleaning formula up off the floor when I got back. I was gone for maybe 20 minutes at the most. She is such a great helper and got Raya into the shower for me while I finished cleaning up the mess and got a new pump bag ready.


Tuesday was not. Tuesday was hard. Raya had what was probably her second worst day at therapy ever. Of course it happened to be one of the rare times when we ran into friends who were there for feeding therapy. It's always fun to have people you actually know outside of therapy see your kid having a major meltdown at therapy. It took her about 90 minutes of crying and fit throwing to finally calm down and participate, but not before she got upset again at the fact that she didn't get to play in the OT room at all that day because she had instead chosen to waste her entire OT hour crying and refusing to do anything or talk to anyone. Eventually she got over it and was able to eat some fries and ketchup (much to my dismay). I think all of my children like ketchup out of spite for me. I hate everything about it. It was painful and nearly gag-inducing to watch her squeeze and suck every last drop of ketchup out of the packet we had brought to therapy. My siblings would have loved it.
The rest of Tuesday was just hard for me and I can't really even explain why. Suffice it to say that we are soon going to be stepping into a whole new side of medical complexity (mental health) that I had hoped we could avoid but it's becoming apparent that we're not going to be able to do that. It is completely understandable that a child with her medical history would need some support in that area, it's just hard for me to not feel like this is another area where I'm inadequate for her needs. A mother should be able to give her child the emotional and mental support that they need without having to bring in outside help, ya know? Anyway, we'll see how that all unfolds.

Wednesday morning was really weird. Raya slept in until 9:30 and that's completely unheard of. I don't think she ever slept that late even as a baby. Cole had an appointment with the allergist/asthma doc at 9:30 so I had to leave before Raya was even awake. After I got home, she was still pretty groggy and sluggish. It was very strange.

Cole's appointment went great. The good news is that his asthma is doing fabulous and he rarely ever has any issues at all anymore. He also weighs the same as his 11 year old sister, which is good for him and probably not so much for her but what can you do. They both eat as much as I do most of the time, and sometimes more. The not so great news is that he has now added blueberries to the list of foods that he's allergic to. It may be more of an oral allergy syndrome type allergy, where the pollen in the air affects the way his body reacts to food, but either way I'm pretty sure he's sworn off of fresh blueberries from now on. His list includes peanuts, all tree nuts, bananas, mangoes, avocados, kiwi, and now blueberries. He hasn't actually reacted to avocado and kiwi but was told that because he's allergic to banana and mango, he's very likely to have the same reaction to avocado and kiwi and he would just rather not risk it. It's such a relief as a mom to know that he would never willingly ingest any of the things he's allergic to. Some kids crave the foods they're allergic to, or try to sneak them. Cole did that occasionally when he was younger, but thank goodness he's old enough now to be aware, careful, and more or less responsible when it comes to his food allergies.

After his appointment, we went home and got everybody into their swim suits and headed to the neighborhood pool to swim with our friends from church. It was HOT and the sun was scorching, but the kids had a good time. I managed to only get the front of my thighs burned, and I kept Piper from getting any sun on her, so I considered it a success. I was afraid Ashtyn was going to get sick after we swam because I swear she is prone to aspirating pool water and then getting respiratory infections and she sounded kind of junky afterward, but she didn't. Maybe she's finally grown out of that at 11 years old. We went home and got everybody showered and dressed and then just relaxed at home for the rest of the afternoon.

Thursday, Raya's respite/hab provider came over at lunch time and sat with Raya while she picked at a potato. We called and sang "Happy Birthday" to my darling grandpa, who turned 90 that day. Singing to people on their birthdays is one of my kids' favorite things to do. Other than that, the kids bickered all day and I eventually sent the two oldest outside to pull all the dead plants out of the garden. That way, I didn't have to listen to them fight and they got something helpful accomplished. I had not gotten much sleep the night before and I was just flat out tired all day & evening. I completely spaced going to the church activity that night and realized at 11:00 that night that I had forgotten about it. It was a service project making "angel boxes" for mothers who don't get to bring their babies home from the hospital and I really wanted to go. I had a pretty fussy baby that evening though so I probably wouldn't have been much help anyway. She and I ended up snuggling on the couch and once she fell asleep, I didn't dare move.

(and yes, I know I look tired)

Friday is movie day. One of the theater chains here does a summer movie deal where you can get tickets to 10 rerun kids' movies for $7 per person, so you get to go to one movie a week all summer long. It's a great deal and gets us out of the house and into somebody else's air conditioning. :) The kids have seen most of the movies already but they don't care, and I've only seen one of them so it's nice for me to see a lot of new-to-me movies. I have to admit that I was a bit scared of the idea of taking 5 kids to the movies by myself, but so far it's gone just fine. Our kids love movies so they sit through them pretty well. Even Raya does well. The only part she has a hard time with is right before the movie starts when they're doing the Dolby Digital sound thing and it's really loud. She puts her hands over her ears all the way through it but after the movie starts, she's fine. We were early yesterday so we had our pick of seats in the whole theater and had some time to just sit and relax before it started.
Raya's other favorite thing about the movie theater is that because it's dark, she can check out her glow-in-the-dark G tube:

I spent the rest of today letting the kids run amok while I cooked. I took dinner to a friend that just had a baby, and also had the missionaries over for dinner, so I actually put forth effort and made some good food. :) My friend Brooke and her daughter stopped by for a visit so Brooke could love on Piper for a bit. Piper is starting to let out a giggle here and there now, which of course is adorable. :)

I was pretty excited that I actually pulled off having dinner cooked & ready to deliver at the time I had wanted to deliver it. That doesn't always happen. It tasted good too, which is always a good thing. We dropped off the food and then came home and got things ready for the sister missionaries to come over. Since Donny and the big kids were at karate, it was just me and the two little girls at home and Raya wasn't feeling like eating dinner so she just watched Frozen and played while we ate and talked. After dinner, they shared a very sweet little message with us that was really geared towards Raya. Over dinner, they had asked me about Raya and I had given them the Reader's Digest version of her medical life. People are always curious about how and why a 4 year old can go without eating, and I'm always happy to explain.

Anyway, I was very touched by their message. It was all about how Jesus died for all of us because he loves us, and that through the Atonement, He felt the pain of everything we experience in life. I had not really elaborated on the fact that Raya is in pain a lot of the time when I was explaining her conditions to them, and I had to hold back tears when they were explaining to my sweet, wiggly 4 year old that Jesus knows exactly how she feels whenever she's sad, scared, upset, or when her tummy hurts and she doesn't feel good. I'm sure anyone could have deduced from our conversation that pain is a frequent part of Raya's life, but I know they were inspired to say that to her. I have learned over the years to never underestimate what a young child learns from lessons at church or at home about the gospel of Jesus Christ, and I know that even if she doesn't remember that exact conversation with the missionaries in the future, they have planted in her mind that Jesus knows how she feels when she is hurting. It was a good reminder for me too.

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