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Long and exhausting day, part 2

If you missed Part 1 of our incredibly long & emotionally exhausting day, click here to read it.

After I had a chance to collect myself a little, it was time to go to her next appointment. This one was her annual CP screening clinic at a clinic WAY downtown that I really don't like going to. One of our worst doctor's appointment experiences ever happened at that clinic and after that, I never wanted to go back but we have to once or twice a year. It takes us about an hour to drive there so I always leave 90 minutes early just to account for traffic. It was the middle of the day so Raya snoozed most of the way there with her "blue blanket" which is really pink plaid. No matter how many times I tell her it's pink, she still insists that it's blue. Whatever.

I was still replaying the events of the preschool evaluation in my mind (much more calmly than the drive from the school to home) and flipped the radio station. I caught the end of the song that I used in Raya's Feeding Tube Awareness Week video and the tears came flooding back as I heard the words, "I won't give up on us, even when the skies get rough. I'm giving you all my love, I'm still looking up." Sometimes I just need to hear those words to remind me that things will be okay however it all works out. I understand that Heavenly Father has a plan for Raya and that He is aware of her needs. The human in me struggles with the frustration of not being able to see what that plan is or know how it will work out. When I pulled into the parking lot of the clinic, Raya was still out cold and looking very uncomfortable:
It makes your neck hurt just looking at her, doesn't it. I hated to wake her up but I was glad she'd gotten a little bit of a nap. I hadn't had time to get her formula ready before we left so I brought it in with us and hooked her up to a bolus feed while we waited for the NP. She was very excited to put on her "lion dress" (aka hospital gown with tigers on it) and was still really sleepy so she was fairly calm for a change.

The NP that we see for the CP screening appointments is absolutely delightful. I was so grateful that the appointment was with her or I might have been a complete basketcase the whole time. :) We went over everything that's in her chart from previous visits to that clinic, her current status on anything significant, any concerns either of us had, and the future appointments I need to schedule. We had talked before about having a developmental pediatrician follow Raya but I feel like right now, I'm maxed out on appointments and there aren't any blaring deficits that aren't already being dealt with. She said that if the concerns we're working on now don't improve or become more of a problem, that a developmental ped would be a good person to consult with so I'm filing that away for future use. :)

One of the things we talked about was potty training. Those two words strike fear into the hearts of parents of toddlers everywhere. Factor in trying to get a kid to eat on top of that, and it's completely overwhelming. This is one area where people who have been around Raya don't really understand that she's not ready to potty train. Potty training a tube-fed child is not the same as potty training a child who eats. Tube fed kids get 100% of their fluids on a daily basis because they don't really have a choice in the matter. :) Tube fed kids are also on a liquid diet. Right now, at least 75-90% of Raya's calories are from liquid and she also drinks water and eats ice cubes all day long too so there's a lot of fluids flowing through that little body. She never tells us when she needs her diaper changed. If somebody asks her if she has a poopy diaper, she'll sniff the air and say, "I fehw sumpeen!" (I smell something!) but she never tells us when she's wet or poopy. Her diaper is always soaked to the limit in the morning and she's not even getting overnight feeds anymore. Given what we know about her GI tract and the way that her brain interprets sensory input, it's also possible that Raya's brain doesn't register the feelings of needing to go to the bathroom just like she doesn't register hunger or fullness and feels exaggerated pain sensations in her gut. And let's not forget that Raya moves at her own pace and doesn't do things until she's good and ready. The reason I'm explaining all this is because recently, some comments have been made to me about it being time to potty train Raya since she's almost 3, and I want people to understand that some children just are not ready to potty train when the general public thinks they should be. In other words, don't judge me (or anybody else) for not potty training a child who is not ready to potty train just because she's "old enough" to be potty trained. There's a lot more to it than meets the eye. Anyway, the NP told me that with Raya's long term care insurance, when she turns 3, diapers will be a covered expense. That was the best news I got all day. :)

She told me that I needed to schedule our 1 year follow-up with the geneticist for January. They were supposed to have checked with our insurance about having some blood tests done on Donny and me and then call to schedule that appointment, but they never did. When I talked to the scheduler, she said that the geneticist doesn't have anything open until next June so I have to call them tomorrow and see if they can get both of those issues taken care of. Things are going well with Raya CP-wise so we don't need to go back to the screening clinic for another 18 months.

The highlight of my day (and Raya's) was that there was a whole ice cream buffet set up in the lobby of the clinic. I don't know what the occasion was but I really didn't care. Ice cream was totally what I needed right then. Raya had been a very patient and good girl during the appointment so I let her pick out toppings for her ice cream. She picked crushed Oreos, mini M&Ms, and colored sprinkles with chocolate, vanilla and strawberry ice cream. I must have looked as haggard as I felt at that point because the lady said, "Mom have ice cream too?" and then she loaded me up with chocolate ice cream. I smothered it in Oreos and carmel sauce and we sat outside on a bench and ate it. I fully expect her to have a tummy ache at midnight but we both needed some ice cream so I let her eat it anyway.
As you can see in the pictures, she didn't eat much of it. She mostly scooped up the ice cream that had M&Ms on it, picked off the M&Ms, and flung the ice cream back into the bowl. Then she stirred it all together and at that point, I decided it was time for her to be done. We got in the car and drove an hour to pick up Kaida from the friend who graciously kept her for me all day long, and then went straight to the school to pick up the kids, THEN went home. I used a quarter of a tank of gas today.

When we got home, there was a UPS slip taped to the door saying that they'd attempted to deliver 2 packages from our home health company but couldn't leave them because one of the insurance companies requires a signature. (SO annoying) The time on the slip was only 30 minutes before we got home so I called to see if they could come back. The lady told me they wouldn't do that. I told her that on the slip, it said they'd try again tomorrow between 2 and 5 pm but that we wouldn't be home then either and we're moving on Thursday. She said I'd have to just go to their depot and pick them up between 7:45 and 9:00 pm tonight. The floodgates opened again and I sniffled when I asked her for the address. She said to make sure I brought my driver's license and I told her that the name & address on my license wouldn't match the name & address on the packages because they were being shipped from our home health company to a 2 year old. She said I'd have to bring a utility bill that matched the address and proof that I was Raya's mother in order to pick the packages up. Ridiculous. If it had just been extension tubes, I would have said to forget it but one of the boxes was the spare button kit that I begged for and we need that. The Lord must have known that having to drag 4 kids to the UPS depot 45 minutes after bedtime after the day I've had today would have pushed me over the edge because the UPS guy did end up having time to come back. Whew. Lucky for the kids, a very nice woman from church was kind enough to bring dinner over to us tonight so they actually got to eat something other than burritos.

Last but not least, I called the surgeon's office and scheduled an appointment for him to take a look at Raya's scar tissue. It's getting bigger and causing higher-than-necessary risk of having to go to the ER when the tube gets pulled out. I don't know if he'll want to do anything to remove the scar tissue or not but I think we need to at least discuss it.

Today has been a really emotionally exhausting day. I am so grateful that we've gotten to the point where Raya's doing well enough to even consider preschool and that she's made so much progress in the 2 years and 9 months that she's been getting therapies. That gratitude doesn't take away from the fact that we are still dealing with hard things. They are not the life-or-death hard things that many of our friends are dealing with, but they still affect her future and her quality of life and they are still hard. Hopefully tomorrow's allergist appointment will go smoothly and be productive and I'll be able to get everything that's not packed yet ready to move on Thursday. I said it yesterday morning and I'll say it again, if we make it through this week in one piece, it will be something to celebrate. :)


  1. What a day. I wish I didn't understand, but I do. I hope you get some good rest tonight and wake up refreshed tomorrow. Philippians 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus."

  2. Wow, I'm tired just reading all that. Such a tender mercy that the UPS guy came back! And I'm glad you got ice cream. Nothin' like chocolate and sugar to make a momma feel better.

  3. Hope your week gets easier Momma.

  4. hey, so i think i found you from kirsten barton's blog (childhood friend) and have been checking in here now and then. i have a 9yo who is autistic and while we are in totally different boats, i relate to a lot of what you post. It's HARD. these evaluations and appointments and everything.

    one tip that i found useful (and i'm pretty sure i did this for my son's preschool eval - i think that was the first time) was to write up a summary of my kid. Everything you can think of. EVERYTHING. Because I was so scared that he would be an angel and they wouldn't see the 'real' him, just like you. so i write up something on the computer with headings like 'sensory', eating, sleep, language, motor skills, etc. and just try to write EVERYTHING down. Then i give it to whoever's evaluating him BEFORE they go into the meeting (at the meeting, just right at the beginning). It has worked SO well, and that first time I did it actually led us to the right diagnosis, some of the things I wrote none of his teachers had seen and vice versa. i wrote one up (it's been a couple of years) this week, actually as we try a new treatment plan.
    Good luck, hang in there!

    1. Thank you for the suggestions. I had tried to prepare ahead of time but with packing to move the same week and not really knowing what to prepare, it just never got done. I like your idea though and I need to do that anyway just for a reference. If we do have to appeal for a new evaluation, I'll definitely be ready for it!


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