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First day of respite

A few more threads of the apron strings were cut today. We FINALLY started using the respite care that Raya's been eligible for since sometime earlier this year. We met Megan a couple weeks ago and Raya instantly loved her. We feel like she will be a good fit for Raya. 

It really shouldn't have taken that long to start making use of this great resource that we're blessed to have available to us. I'll admit that part of the reason it took so long was that I was having a hard time with the idea of leaving her with someone, especially when she still had the GJ tube. Her care was MUCH more complicated then. Another reason was that I was trying to find a family member or friend that was willing to do it and couldn't find anybody. I had called one agency a couple of times and they only returned my phone call once, and after a month of trying to get somewhere with their agency, I gave up on them.

A few weeks later, I happened to be at an event for Down Syndrome and there was a respite care agency with a booth there. I got their information & contacted them and the rest is history. :) I was told earlier in the week that we would have to wait (like everyone else in AZ that gets respite care) to get the hours authorized again because of changes to the program that went into effect on the 1st of October. We thought we'd have to wait another week or two, but the next day I got emails from the provider and our coordinator saying that the approval had gone through & we could start.

Another reason we hadn't started yet is because I wasn't sure what to use the hours for. I'm used to having my schedule dictated by Raya's appointments and whatever the other 3 kids are doing, so I really didn't have anything specific in mind. Then Raya went to nursery at church, and after 4 weeks, she caught a cold. Not that nursery was definitely where she picked it up, but it was pretty likely that it was. We've always felt really lucky that Raya has been as healthy as she's been (as in free of illness healthy :). Then when she got a stuffy nose, she instantly lost interest in the little bit of food that she had been eating. It was our first real taste of how quickly & easily the progress we've worked hard for towards Raya eating can be reversed, and we decided that we'd be well to use some of our respite hours to keep her at home instead of taking her to church. Our decision has been met with mixed reactions, so not that I really need to explain myself, but I thought I'd explain a little more about that decision.

After seeing how much she was affected by a mild little cold, we realized that we had no idea what the effects might be if she were to catch something more serious, like the flu. Nobody can say for sure, but to me it just seems logical that if it was so incredibly difficult to resolve her months of uncontrollable vomiting and regulate the hypersensitivity in her gut, a stomach flu could send her body right back to where it was before. We have seen over and over again that her body doesn't react well to changes with her digestive system, and a flu virus could possibly wreak havoc on her GI tract. After 18 solid months of vomit and everything that goes with it, I have no desire to see Raya go back to that life. I don't think my washing machine or my heart could deal with it.

Overreacting? Perhaps. I've always been slightly on the germophobe side, especially since Raya came along. She might get the flu anyway. She might get the flu and handle it like a typical child. But she might not. After having all of the experiences that I've had in taking care of her; experiences that most people will never even know about or understand, I'm not willing to take that risk. We are blessed enough to have this resource available to us and we feel like keeping her home for a while is the best thing for her. For the next few months, she won't be going too many places, especially if there are sick people.

Being at church with Donny and the other 3 kids but not Raya was very strange. I realized that it will take some time for me to get used to sitting all the way through church again. It's been a very long time since that's happened. I was always walking the halls with Raya or taking her in the mothers' room to change her diaper or set up a feed or something. She was always a restless baby and I haven't heard many of the lessons or talks at church since she was born so I'm looking forward to that. Megan is also coming for a couple hours tomorrow so that I can go grocery shopping and run some other errands (like figure out Halloween costumes) with 1 kid instead of 2. :)


  1. I've been following little Raya's journey for a while now. My daughter Kohyn has such a similar situation, we ised your advice about the G-tube pump! THANKS!! I'd love to talk to you sometime, maybe through e-mail? I can't get a Dr. to take me seriously, and Kohyn is back to throwing up every feed again. My e-mail is

    Hope to talk to you soon!


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