I’ve taken far too long of a hiatus from writing of any sort. As I splash back in, it’s only fitting I start with Miss Roo’s News before rushing off to other topics.
Summer Daze
Overall, Ruth (and our entire family) had a wonderful summer. Looking back, I would say we had a Goldilocks summer: not too fast, not too slow, just right. Yet I admit that it all seems blurred together now since entering hyperdrive somewhere in August. Suddenly it feels like we’re really moving, but maybe that’s because the windows are still down.
Were there hard parts? Yes, there were. Family Camp was unexpectedly hard for me, Ruth had some serious sick days and late nights, and we lost a baby (who was due around Thanksgiving). Not to mention what has seemed like our fair share of fiery darts necessitating that we hold the Shield of Faith still higher. Yet through all this turmoil, God continues to form us into the image of His Son. It is not wasted: He uses the whole buffalo.
But this post is about Ruth. I will save further reflections from those dark valleys for another post.
Were there hard parts? Yes, there were. Family Camp was unexpectedly hard for me, Ruth had some serious sick days and late nights, and we lost a baby (who was due around Thanksgiving). Not to mention what has seemed like our fair share of fiery darts necessitating that we hold the Shield of Faith still higher. Yet through all this turmoil, God continues to form us into the image of His Son. It is not wasted: He uses the whole buffalo.
But this post is about Ruth. I will save further reflections from those dark valleys for another post.
Status Updates
The last Miss Roo's News post I shared was The Great Wean of '25 all the way back in mid-January. Since then we have not tried to wean Ruth (off her G-tube) again. It took her a long time to gain back her weight. That's the nature of her condition. She's small, and she grows slowly.
Attempting another wean is not currently in our plans. Aside from a few rare spurts this summer (usually when she's teething), Ruth has had little interest in having any amount of food (even simple tastes) orally. We've made peace with that (for the most part). We're focused on other areas of her development.
The biggest news in this realm is that we transitioned her over to food blends. While she still gets some breastmilk (Lauren continues to pump, bless her) the bulk of Ruth's diet is food through her tube. We've had to fine tune this and make adjustments so she doesn't get constipated (don't recommend), but we're figuring it out. Throughout the day we feed her every two hours, but she can make it through the night without needing any feeds (usually). It also seems more manageable to pack and go. Who knew pushing blended food through syringes is actually more convenient than using milk bags and feeding poles?
In my last update I reported that Ruth had an adrenal insufficiency. I'm thankful to amend that report with a note stating that it did not last. More tests made it clear that her adrenal levels are just fine. It was only ever an issue because her body was reacting to stress due to the wean. That doesn’t mean we shouldn’t have made the attempt, it just means that the Lord brought it to an end in His perfect timing.
Over the summer we decided to back off on physical therapy. This was a decision that Lauren covered in prayer, and it was the right one. We wanted to create more opportunities for normal summer activities for Ruth: friendship, play, adventure, reading, parks, etc. While we enjoy our physical therapists, Ruth usually didn't. Sessions often resulted in tears, and we weren’t seeing the progress we wanted. So instead of sinking two hours into driving and another hour into therapy, we asked for a hiatus. Sometimes children need a less-is-more approach. Lauren committed to spending some of that reclaimed time doing Movement Lessons with Ruth instead. These always yield gains for Ruth.
Ruth has also had fewer appointments in Iowa City. We’re thankful our trips that direction have been fewer and farther between. It was a strange feeling to pass Ruth’s birthday and remember how much time we spent down there only two years ago. When trips to Iowa City come up now, they are all-day affairs. Our next series of appointments are on September 30th. Ruth will see Genetics, Neurology, and Ophthalmology. These should be standard check-ups. Pray for no surprises.
Overall, Ruth is relatively stable. At the moment there’s no bracing planned and no surgeries to anticipate. She still struggles with vomiting occasionally—usually when she gets a bit too much food or if she catches a cold (she struggles with the drainage).
The most unpredictable and difficult part of Ruth’s care over the past few months have been her sleep disruptions. For weeks she would wake up in the early morning hours, often 2:00 or 3:00AM, and decide she was awake for the day. We would be up with her for 2-4 hours (less than that was thrilling) until she would go back to sleep. Eventually it would catch up with her. But she could sleep during the day. We couldn’t.
I took most of those graveyard shifts, but after so many consecutive nights of interrupted sleep I would need to tap out and Lauren would take her. Sometimes we would simply sit with her in a chair; sometimes we would let her romp around on the floor nearby. At the time it seemed like the dreaded sleep disruptions would never end. For weeks our most prayed prayer was that God would help Ruth sleep through the night. Many thanks to those who joined us in praying for this.
Praise God, that prayer has been answered! While Ruth still wakes up in the middle of the night, she no longer stays up for hours. I’m able to help her get back to sleep fairly quickly. Her sleep has been much improved, and we’re grateful for that, but we recognize we could be in for another season of disruptions at any time. Hopefully we’ll remember that they’re just that: temporary seasons.
Attempting another wean is not currently in our plans. Aside from a few rare spurts this summer (usually when she's teething), Ruth has had little interest in having any amount of food (even simple tastes) orally. We've made peace with that (for the most part). We're focused on other areas of her development.
The biggest news in this realm is that we transitioned her over to food blends. While she still gets some breastmilk (Lauren continues to pump, bless her) the bulk of Ruth's diet is food through her tube. We've had to fine tune this and make adjustments so she doesn't get constipated (don't recommend), but we're figuring it out. Throughout the day we feed her every two hours, but she can make it through the night without needing any feeds (usually). It also seems more manageable to pack and go. Who knew pushing blended food through syringes is actually more convenient than using milk bags and feeding poles?
In my last update I reported that Ruth had an adrenal insufficiency. I'm thankful to amend that report with a note stating that it did not last. More tests made it clear that her adrenal levels are just fine. It was only ever an issue because her body was reacting to stress due to the wean. That doesn’t mean we shouldn’t have made the attempt, it just means that the Lord brought it to an end in His perfect timing.
Over the summer we decided to back off on physical therapy. This was a decision that Lauren covered in prayer, and it was the right one. We wanted to create more opportunities for normal summer activities for Ruth: friendship, play, adventure, reading, parks, etc. While we enjoy our physical therapists, Ruth usually didn't. Sessions often resulted in tears, and we weren’t seeing the progress we wanted. So instead of sinking two hours into driving and another hour into therapy, we asked for a hiatus. Sometimes children need a less-is-more approach. Lauren committed to spending some of that reclaimed time doing Movement Lessons with Ruth instead. These always yield gains for Ruth.
Ruth has also had fewer appointments in Iowa City. We’re thankful our trips that direction have been fewer and farther between. It was a strange feeling to pass Ruth’s birthday and remember how much time we spent down there only two years ago. When trips to Iowa City come up now, they are all-day affairs. Our next series of appointments are on September 30th. Ruth will see Genetics, Neurology, and Ophthalmology. These should be standard check-ups. Pray for no surprises.
Overall, Ruth is relatively stable. At the moment there’s no bracing planned and no surgeries to anticipate. She still struggles with vomiting occasionally—usually when she gets a bit too much food or if she catches a cold (she struggles with the drainage).
The most unpredictable and difficult part of Ruth’s care over the past few months have been her sleep disruptions. For weeks she would wake up in the early morning hours, often 2:00 or 3:00AM, and decide she was awake for the day. We would be up with her for 2-4 hours (less than that was thrilling) until she would go back to sleep. Eventually it would catch up with her. But she could sleep during the day. We couldn’t.
I took most of those graveyard shifts, but after so many consecutive nights of interrupted sleep I would need to tap out and Lauren would take her. Sometimes we would simply sit with her in a chair; sometimes we would let her romp around on the floor nearby. At the time it seemed like the dreaded sleep disruptions would never end. For weeks our most prayed prayer was that God would help Ruth sleep through the night. Many thanks to those who joined us in praying for this.
Praise God, that prayer has been answered! While Ruth still wakes up in the middle of the night, she no longer stays up for hours. I’m able to help her get back to sleep fairly quickly. Her sleep has been much improved, and we’re grateful for that, but we recognize we could be in for another season of disruptions at any time. Hopefully we’ll remember that they’re just that: temporary seasons.
Encouragements
Now for the best part: a speed round of all the fun, new, exciting things Ruth Truth is doing!
- Ruth started crawling (more like leapfrogging) on Father’s Day. I couldn’t have asked for a better gift. We were excited to put the baby gate back up. It's actually needed!
- Mobility brings exploration. Ruth is discovering everything she can about the house. She especially likes chasing golf balls around the kitchen tile.
- She is happy to enjoy the outdoors from the comfort of the stroller or carrier. She likes looking at trees, birds, dogs, and the night sky.
- She confirms that gravity still works. At dinner Ruth will sit at the table and slide anything within reach onto the floor.
- It’s one of our favorite things to listen to her little voice babble. Sometimes she’ll scream like a banshee just to give herself a good laugh. We’ve also been encouraged by how well she's communicating through hand signs.
And a short list of a few of Ruth’s favorite things:
- Her big sister, Martha (they adore each other)
- Riding on my shoulders like Freak the Mighty
- Holding tight to Mama like a little Koala
- People-watching, like any of us
- Mirrors (so she can make faces at herself)
- Baby dolls (she holds and pats them like she’s their Mama)