- Inside my head: Hey, I could read Ava a book right now!
- Go find Ava’s Big Mac Button. Since our house is for sale, I can’t keep it in a convenient location; must remember where I put it.
- Record a new message on found button: “Turn the page” now plays back whenever she smacks it.
- Find the book icon the speech therapist gave me to put on the button so she associates it with reading.
- Sit down on the floor with Ava, the book and the button.
- Realize she can’t reach the button well while floor-sitting; need to use the high chair.
- Realize she has a poopy diaper.
- While changing diaper, observe child #1 having a (rare) accident on the carpet. Did I mention our house is on the market?
- Help Craig clean up accident. Not because he isn’t capable, but because teamwork is just kinder when it comes to accidents.
- Rearrange dining room chair/high chair setup.
- Situate Ava in her high chair with book and button on the tray.
- Remember she only has one hearing aid, as the other is still out for repair: feel bad for a moment; move on because nothing can be done about the fact that she may not hear half of what we read.
- Start reading, giving her time to remember she’s supposed to hit the button to tell me to turn the page.
- We read the book, and she gets into a button-smacking groove about halfway through! Does she get what she’s doing? Who knows! It’s a start.
- Hey, we did it! Let’s try it one more time!
- But first, why not take a picture of her with her fun book and the button?
- (Series of blurry/head-turned-away iPhone pictures ensues.)
- Fine, let’s quit trying to show off and just read the book again.
- Elijah runs up, begins excitedly hitting the button for Ava.
- Explain we have to be patient and wait for Ava to do it; he can have a turn after.
- Start reading again, with Elijah banished to a buttonless book on the couch…but now Ava is rubbing her eyes: her way of telling me she is DONE reading and probably also tired.
- Rubbing and yawning persists; it’s over.
- Go to the couch and read with Elijah while he promptly smacks the button for each page turn.
- Meanwhile glance guiltily at Ava, still sitting in her high chair, rubbing her eyes, bored.
- Leave Elijah to play with the button while I get Ava’s bath ready; it’s 4:30, Craig’s leaving for work and I have to get started on, yes, nighttime routine things, or the kids will get to bed later than I’d like. Book time is over.
So, with that, we are getting ready for Christmas like everyone else, and instead of New Year’s resolutions, will start working our way through the projects & adjustments we need to make before the little guy joins us in June.
…and I just caught Ava chewing on her feeding tube, so that’s my cue to sign off!
It’s Friday and Ava is still resting at Arnold Palmer Hospital, recovering from the cold virus. She was scheduled to get her feeding tube (through her stomach) this past Tuesday, but the anesthesiologist would not proceed out of caution because of the cold. Since Ava has always had difficulty getting enough fluids in her (thus the purpose of the feeding tube), we have kept her here at APH to allow her the rest and fluids she needs to fully recover.
Feeding Ava has for sure been one of our biggest challenges since she was born, and it’s still the most time-consuming piece of her care. Those of you who have been in-person with us over the last 18 months probably have a little idea of what we mean.
We’ve come to the decision that we need to get Ava a feeding tube, and it’s finally scheduled for next week. So many professionals have praised us for our good job of feeding her and have said how great it is that she doesn’t need a feeding tube. Thus far we haven’t had to do anything medically invasive with Ava and everyone said that was really great. (It was.) But finally this fall some of our specialists really heard us when we said it takes 4-5 hours to feed her daily, with no relief in sight…and even then, she wasn’t getting enough fluids, and by now was no longer gaining weight, either.
When they really heard us, they stopped congratulating us and suggested a feeding tube. I’m not sure I’ve ever been so relieved to have someone stop telling me I was doing a good job. There was a time when I might have considered the tube a result of our failed effort, but it feels nothing like that really. My goodness, we have nearly been brought to the end of ourselves trying to feed this child. It is not worth the sacrifice to our family life anymore.
It’s best for Ava’s health that she gets the tube, and we are at peace with the decision.
The tube means she’ll be able to get nutrients, fluid and her seizure medication directly to her stomach when she needs it. We won’t have to be at home to give her fluids – something that has controlled our schedule for a long time.
The tube does NOT mean is that we’ll quit giving Ava food or give up on her eating and drinking as she grows. She loves her purees and we will still let her enjoy meals. Now we’ll also have time to work on her oral therapy again, with a goal of her eventually eating and drinking independently.
The tube will be on her abdomen, not down her nose. At first it’ll be a longer Foley tube, and after her body adjust it’ll be changed out for a small Mic-key button.
Ava’s feeding tube endoscopy will be this coming Tuesday, Nov. 10th. The procedure should be short and simple, but we have to stay at the hospital for a couple of nights while they help her body adjust and show us how to use her new equipment.
I’ll try to update as to how she’s doing. This is not a high-risk procedure and we don’t anticipate problems…just might make for a long week for us all. 🙂
We are now a about a year into our relationship with early intervention, therapists, insurance authorizations, tests and specialists. Much of our experience has been frustrating. We’ve gotten long waits, a lot of no’s, a lot of run-arounds, a lot of “Well, if you had medicaid…” and the most-hated line: “She’s just a baby – there’s no rush.”
But THIS WEEK we are doing the happy dance. We got insurance to approve Ava’s new, uber-expensive formula – something even our doctor’s office said might not be possible. One of our therapists got a hold of a brand new $150 therapy tool to loan us while we wait for insurance to approve ours. And the biggest of all, early intervention significantly upped our services today after a year of run-arounds and no’s.
Even though I intended to ASK for more services today – and did – I didn’t expect a yes and was shocked when we got it without a fight. In fact, I think she had decided to give it to us even before I asked. Sometimes I fight hard for things and do lots of research and advocate and make phone calls. That probably helped a lot getting the formula to our front door in a week. But sometimes I don’t feel like advocating. If I think it’s going to be a waste of time, it’s hard to feel motivated to push for services. That’s how I felt going into the early intervention meeting today.
In moments like this I see God just take care of things for us when I don’t have the fight in me. I would love to be able to tell you we were praying really hard for the outcome of the meeting and that God answered our prayer and it was this awesome super-spiritual thing. Or even that it was my great research, clever presentation and convincing proof that changed our case worker’s heart today. The truth is, I didn’t pray very hard about it and I didn’t put much prep into this meeting. It just didn’t happen.
I do believe God answers prayer, but I also believe that he’s strong when we are weak and often he just chooses to be kind to us no matter what we do to try to control the outcomes.
The special needs life is a roller coaster for sure, and we have other immanent battles to face. But today, we are thankful for a few victories, and we will do the happy dance.
|I’m not sure yet where we’re going to stockpile our monthly supply of formula, but we’re pretty happy to have it.|
Ava is 14 months old (6-24-15), and for the past few days, I have been feeling blue. I’ve been doing pretty well lately. I just think that my grieving has moved from grieving over the changes in my life to grieving over all the challenges my daughter faces.