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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Saturday, October 12, 2013

Friends who "get it"

I've said it before and I'll say it many more times: we have been SO incredibly blessed to have so many other "tubie" families living in our area. There are only 2 things I would change if I could. One would be that the metro area we live in wasn't so huge and spread out since a lot of us are on opposite corners and more than an hour apart. The other would be that I only wish I could have met them all MUCH earlier on! (most of them either weren't tube feeding yet or weren't born yet when Raya started tube feeding though.) Anyway, I can't say enough about how much of a help and a sanity saver it has been for me to have these awesome momma friends and their kiddos that we know in real life, in addition to all of the amazing people I've met online.

What makes it even better is that Raya is old enough now that she's starting to understand the concept of friends. Toddler friendships are adorable and I love that she has friends at school and at church. I have to say though, that there is just something unique and special about friendships between kiddos with similar medical issues. I've introduced Raya's sweet little friends Lily & Whitney before:

The first time they met, they were between 14 months and 2 yrs 4 mos, and the age difference was still enough that they weren't super interested in each other, although they did notice each other's G tubes. Now that they're older (2 1/2 to almost 4), they talk and play and giggle together, and admire each other's feeding pump backpacks:
"I like your backpack, Whitney! She has a really cute backpack."

This week, we got to babysit one of Raya's other little buddies. He's about 4 months older than she is and although there are some differences in their medical conditions, they have a LOT of similarities as well, which is how his mom and I got in contact to begin with. Her other kids are close in age to mine and we've all become good friends. We were excited for him to come hang out with us for the afternoon. I told Raya that her friend J was coming over and then had to clarify that it was the J with the tube in his tummy, not the J from school. All of my kids refer to him as "the J with the tube in his tummy". :)

He was due for a feed shortly after his mom dropped him off so I plugged him in and got him going. As many times as I've plugged my own kid in to her pump, it still felt a little funny plugging another kid in! He thought it was pretty funny having another adult plug him in too since his mom is the only one that ever feeds him. He asked me once or twice, "You gonna feed me?" and when I told him I was and started plugging him in, the confused look was replaced by a big smile and he said, "You gonna feed me!" I think he thought it was pretty neat that somebody besides his mom knew how to do it.

As I was putting his backpack on him, Raya and J noticed that they had the same backpack. I wish I had it on video because they were cracking me up! They got all excited and went back and forth between looking at each other's backpacks and turning around in circles like puppies chasing their tails, trying to see their OWN backpacks so that they could verify that they did, in fact, have matching backpacks on. All of this while saying excitedly, "We have matching backpacks!" It was both hilarious and adorable. :)

The kids played really well together other than the occasional jealous moment from one of my kids who didn't think she was getting enough "J time" compared to the other kids. :)

As funny as it can be having one tube fed kid around, it was even funnier having 2, and especially because of the age they're at. (not so sure it would be funny in the middle of the night though!) When J's feed was over and I went to disconnect him, I told him to stay put so I could flush his tube. As I was walking to the sink with his syringe, he said, "You gonna put some water in that, okay?" At which point Raya cut in and said, "Yeah, cuz you have to flush his tube." I thanked them for their helpful instructions, flushed his tube and sent them off to play.

I have to say that babysitting a kid who doesn't eat is WAY easier than babysitting a kid who does eat. J's medical conditions mean that there are only a couple of foods he can safely eat without having painful or life-threatening reactions. Throw in some sensory issues, difficulty with oral motor skills like chewing, and difficulty swallowing and you have a kid that could care less about food most of the time. WAAYYYYY easier than babysitting a kid that eats. All I had to do was plug him in and he was good to go. (ah, if only life were really that simple...)

Another "tubie moment" that made me laugh was when both of the kids were wearing their backpacks and J's pump started beeping. Usually when Raya's pump beeps, one of the other kids will see if they can fix it. The older two are getting pretty good at figuring out what's wrong & getting it running again and they're so used to it that it's never a big deal when she starts beeping. However, apparently having 2 kids wearing feeding pumps is cause for panic when one of them starts beeping. At one point, J's pump started beeping and instead of their usual nonchalant reactions, the older kids got kind of a panicky deer in the headlights look and ran to get me so I could figure out who was beeping and fix it.

Since the weather has finally cooled down to a comfortable level, the kids spent some time playing outside. J LOVES cars so he and Raya both took rolling backpacks full of cars out to the back porch to play. I heard somebody's pump beeping again so I went out to investigate and found Raya trying to fix J's pump. As if that wasn't funny enough, the only reason his pump was beeping is because she took it upon herself to zip the front pocket of his backpack the rest of the way, which kinked one of the tubes and made the pump beep. (she can't stand when anything is partially zipped/buttoned/snapped/open/closed and HAS to fix it) We can add to the list of things I never thought I'd hear myself say: "Kids, let's not touch each other's feeding pumps, okay?"

They also thought it would be fun to dig holes in the garden. They said they were making a mountain to drive their cars on. Moments like that make me grateful that Raya is not a twin. :)

When it was time to go, we all walked out onto the front porch and the two little stinkers took off running. Raya was in Periactin mode (i.e. pretending she couldn't hear me and bouncing off the walls trying to fight off the drowsiness) and J didn't want to leave so they ran off together.
And for the record, I am in no way responsible for the outfit she is wearing other than not making her change her clothes. She picked out the size 8 tutu skirt and cheetah pajama pants (which were not the pajamas she had slept in the night before) and refused to take off the hot pink hoodie all day. Fall break=Mommy doesn't care what anybody wears. :)

We love our little tubie buddies!


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